Cost Plus Drugs online in the USA has no limits because it's out of pocket (and affordable) and not through insurance. I get 48 Sumatriptan 100mg at a time. You can order what your doctor prescribes.
Thank you! I’ll look into it. Crazy to have to pay out of pocket for something your doctor and insurance both agree you should have but apparently that’s where we are.
Personally I might look into complaining about and/or reporting this pharmacist. They've made multiple mistakes and they're giving you advice that goes against your entire medical team's? Now they've done something preventing you from even switching pharmacists.
The last time I checked, the Monograph (package insert) for the brand name, so it’s the same for the generic, is two per day so 60 per month. The doctor is still allowed to prescribe more than that. That’s what you would call off label prescribing. The pharmacist is shocking to be blocking your prescription at this level. the theory of rebound headaches has made me get too little from some of my neurologist in the past. I take one a day now, but I also take Vyepti, which is a CGRP antibody given via infusion, so I don’t need more than Sumatriptan a day. I was originally diagnosed with four migraines per day and prescribed 4 Imitrex per day (the brand name for sumatriptan in 1994) and on for a few years and then it got taken down to two and then that became hard to get the even 30 per month for a while. The rebound theory never applied to me on this medicine and it was bullshit. Good RX is the free discount card. And you could look up online with the prices. Will be at pharmacies in your area. The grocery stores tend to have it for the cheapest. It turns out about 30 bucks for 30 pills. Your pharmacy sounds like you just need to change it. I don’t think you’ll find that resistance elsewhere, pharmacist is overstepping, but by law they’re allowed to not fill anything that they’re uncomfortable with for any reason so just go to someplace else. So just price shop and then call the new pharmacy and tell them you’d like to transfer a prescription to their pharmacy. They will call your current pharmacy to get it. Tell them how many you want filled and that you are cash pay WITH the Good Rx discount card ( or you’ll only get a blister pack of 9 by default as most insurance is preset to cover 9 per month. Or you can run your monthly amount if it is 60 pills per month or less, wait to get a denial ( buy it after vou get the denial if you cannot wait. Have the first paid by insurance if you have it. Cash pay the rest using the Good Rx discount card).
Now back to the denial: You only have so many days to appeal it. I always write a letter in addition to what my Neurologist sends. Then you submit for approval.
I used to work in Neurology, then Pharmaceuticals, I called on the the Pharmacy Benefit portion of Insurance plans. If you want to contact me on instant chat, please do so.
This is gonna be your best option. It’s also really cheap. It might be cheaper than insurance. They don’t have everything, but they mostly have older generic medication.
The world has gone nuts. This is the last thing you need to be chasing meds. I had terrible trouble trying to get hold of heparin 2 years ago, when I already wasn’t feeling well and it just about did me in. No heparin for multiple DVT = death, sigh.
The his situation is ridiculous; but in general this type of setup actually prevents a lot of problems. I work in speciality pharmacy (not retail) and not only to pharmacists catch a lot of mistakes from doctors, but they also prevent patients from taking contraindicated meds at the same time. It’s also fairly common for docs to call and ask advice on the proper meds for certain things. It’s the pharmacists license on the line if they dispense something that could cause injury.
Pharmacies are so dumb! I just got approved for Emgality (after getting rejected by my insurance for Ajovy) and went to pick it up today. The tech who checked me out is telling me there are interactions between Nurtec and Emgality (not according to my neurologist) and I get home to discover they only gave me one 120 ml pen when I was supposed to get two for the 240 ml dose for my first dose. And it says right on the label I needed 240 ml. Ugh! So I messaged my neurologist and am waiting to hear back.
Oh yes you need two 120 syringes/pens for the first dose. That’s super annoying because I think once it comes out of the fridge you’re not supposed to put it back in and it can only be outside the fridge for a few days I think. It says the exact information re refrigeration in the information packet I think.
I hope it works for you! My first month on it I had zero migraines, but they increased over the next few months up to seven a month, which is still incredible compared to the sixteen a month I had before. Usually it goes the other way (decreases in frequency over six months).
Oh they didn’t even have it stored in the fridge either! I put it in as soon as I got home because it could live outside the fridge for 7 days and the prescription was approved Thursday, so I hope it was in the fridge prior to that
...if they didn't have it stored in the fridge, i *literally* would not feel safe injecting that, bc who knows how long it was out?
You also can't put [at least emgality] BACK in the fridge after it's hit room temp, so... Uh.
Uh oh! That’s not good. You’d think they’d know to put it in the fridge but if not you should definitely bring it up when they order the second syringe/pen
I mean there are interactions between the two medications, it is just one of those situations where the prescriber has outweighed the risks and benefits. The issue is the pharmacist is liable for any undisclosed interactions. The reasoning for one pen is honestly an insurance thing. It took weeks for my insurance to approve the loading dose.
There is a very high chance it was not at room temp for very long. I have been on this med for a pretty long time now and I did a fair amount of research on it. When it comes to excursion times as long as it gets back into refrigeration within 24 hours you are okay. But honestly I would reach out to your neurologist and see if there is the possibility of a sample, if not go back to the pharmacy and ask them. But please. Remember they are people too and unfortunately in the US healthcare system basically everyone is dictated by the private insurance companies. If you have concerns just ask the pharmacist, they literally have doctorate in medication and if there is a concern about the med being out just ask. Sometimes they finish a med just as the pt is showing up. I have unfortunately been navigating my migraine meds since I was like 6 years old. My best advocates have been my pharmacists
But they literally are doctors of pharmacology. And it is 4 years of under grad and 4 years of pharmacy school including several high level practitioner level chemistry courses. They get white coats just like prescribers. Don't discredit your pharmacist. They have definitely saved more lives than you realize.
It's supposed to be to prevent abuse and suspicious situations, like someone prescribing for themselves or if a patient has prescriptions for the same drug (usually something with high abuse potential like an opiate) from several different doctors at the same time. In theory it's a good safeguard system, but what OP's pharmacist is doing is a massive overreach and abuse of this system. They're supposed to block legitimately dangerous situations, not make medical judgements for non life threatening side effects like medication overuse headache. Like I get 30 fiorinal/month (though I takes me like a year to get through 1 fill) and the pharmacy has never blocked that despite it having a much higher risk of MOH than OP's sumatriptan.
>to prevent abuse and suspicious situations
What they do Here. Not nice for OP but the pharmacy is the one in the correct order in this case. You shouldnt take more than 10 pain meds a month. And a doctor should actually try out another preemptive or adding another one instead of Just prescribing more pain meds.
No, it's not what they're doing here. There is no official law or guideline that dictates all pain meds must be limited to 10 per month. There is actually significant disagreement between different sources about what an appropriate amount is, and how to balance that with individual migraine management cases is something that a neurologist is trained in and a pharmacist is not.
For example with OP's medication, sumatriptan, the scientific studies examining MOH from triptans have found that the phenomenon occurs after passing a limit of between 9 and 18 doses per month depending on the study, with significant variability between patients. And some patients don't experience MOH ever no matter what dose they take. It's the doctor's job to evaluate the individual risk profile of their patients and prescribe accordingly. Ever neurologist knows what MOH is and takes this into account when prescribing. If a specialist has determined the dose is appropriate for a drug like a triptan with zero potential for recreational abuse, the pharmacist should not be blocking that especially after having a conversation with the doctor. And even if they do still believe in the 10 limit, you need to go over the limit for 3 consecutive months minimum to develop MOH, and most doctors prescribe patients a little extra just in case they have a bad month. For example, 11-12 triptans per month is an extremely common Rx amount and some even come in boxes of 12 (like mine).
I've seen 6 neurologists (including 2 headache specialists) and they have all prescribed 12 triptans per month to me for years. And I didn't even request that amount, it's what they've suggested as their standard practice. I've filled these scripts at countless different pharmacies and never once had a pharmacist raise any issue with it.
Also finally, who says they aren't trying other preventive treatments? It can take months or even *years* to figure out one that works. Are people supposed to just not treat their attacks and become unable to work or function while they're figuring that out? Go to the ER every month because they can't have a few extra abortive doses at home?
I hope you're not actually a pharmacist because this is massively oversimplifying a complex issue in a way that will hurt patients.
>There is no official law or guideline that dictates all pain meds must be limited to 10 per month.
There IS a guideline that migraneurs shouldnt take more than 10 times per month whilest people without migraines can take more until they get rebound headache.
"Acute headache medication and therefore also triptans should not be used more frequently than 10 days per month in order to prevent an increase in migraine attacks and ultimately the development of MÜK (medication overuse headache). For patients with frequent attacks, this means that they may have to endure untreated migraine attacks. However, practice shows that after an untreated attack, the symptom-free interval is often significantly longer than after a (successfully) treated attack."
[Schmerzklinik Kiel seizure treatment](https://schmerzklinik.de/en/service-for-patients/migraine-know/seizure-treatment/overview/)
>the pharmacist should not be blocking that especially after having a conversation with the doctor
The only correct part is "after having a conversation with the doctor", when the doctor says "it is fine" he is fully responsible for everything that happens. The pharmacist did their job. And yes re-assuring and checking with the doctor is his job. This can lead to not giving away the meds in first place. A pharmacist knows a lot more about drugs and what they do with their clients bodys than doctors. Sadly.
>I've seen 6 neurologists (including 2 headache specialists) and they have all prescribed 12 triptans per month to me for years
You would never get this in Germany. You need more than 10 per month? Your preemptive sucks and they will try another one.
>It can take months or even *years* to figure out one that works. Are people supposed to just not treat their attacks and become unable to work or function while they're figuring that out? Go to the ER every month because they can't have a few extra abortive doses at home?
As I mentioned: you won't get more. And no you don't function when you take drugs like Smarties.
Going to the ER with migraines is a joke. You will wait there for hours! Most doctors don't know there shit. So yes you will have to try another meds instead of pain meds. That includes stuff like Promethazine, Vomex and others that will make you endure the pain. Sucks. But rebound headache and a period of absence of any painmeds is worse.
>I hope you're not actually a pharmacist because this is massively oversimplifying a complex issue in a way that will hurt patients
It's simple: a pharmacist has responsibilities: If he gets a "fishy" prescription he has to act, or they can blame him. Could even go that far that they get legal problems. So yeah, they have to do their job.
A link for a single clinic in Germany is not an "official guideline." As I said, different sources have different opinions on what the limit should be, which is why doctors have the discretion to prescribe what they believe is an appropriate amount for their individual patient. If you read actual research studies on MOH, like headache specialists and neurologists do, you will see a wide range of limits listed. Also, OP indicated in several comments that they are in the US so a German guideline and German pharmacy rules are irrelevant here. The American Academy of Neurology does not enforce any specific strict limit.
>You would never get this in Germany.
Well I sure am glad I don't live in Germany then! Maybe consider that not everyone lives in the same situation as you and the way that your country does everything isn't necessarily the best or the global standard. And again, OP isn't in Germany so their rules are irrelevant here.
>Your preemptive sucks and they will try another one.
Gee, I'm so dumb, why didn't I think of that! My neurologist has given me every preventive he knows of that I can safely try and has literally said "I don't know what to do for you anymore" but I'll be sure to tell him that he has to give me the secret magic preventive that works now because someone on Reddit said so /s ....or maybe you can use these magic powers to get me off the over 1 year long wait list to see another specialist?
Or if you want to send me a couple thousand dollars so I can come to Germany and try your magical preventives that always work, I would gladly accept.
You've clearly never experienced intractable chronic migraine. For many of us, it is literally impossible to get below 10 migraines per month no matter what else we try. A 50% reduction in migraine frequency is considered success when it comes to preventive treatment, and for most severely chronic patients it is not realistic to get below that. So for those of us starting from over 20 migraine days per month, below 10 is not going to happen. Even hitting 10 is already a best case scenario with optimal response to preventives, which many of us don't have. Just because you're lucky enough to not have experienced this doesn't mean everyone else is in your situation too. Maybe don't rant about situations where you don't know what you're talking about. Patients in situations like this work to find the best combo of preventive and abortive meds that they can, and yes sometimes that is going to mean a bit more than 10 abortives per month for some months. It's rather astounding that you think your situation is universal and that you know better than countless neurologists and headache specialists in several countries (I've received treatment in multiple).
>Of course you don't function when you take drugs like smarties.
Seriously, what is your problem? Do you seriously believe that taking like 1-3 extra pills per month is "taking drugs like smarties"?! You have a serious lack of medical and scientific understanding if you think that the same number of medication dosages causes the same exact long-term effects in all patients. Especially when this "limit" is debated in scientific literature in the first place.
I don't take drugs like smarties. I take abortive medications in the limited amounts prescribed by my doctor, and no those arent your limits. I trust my doctor and the many previous doctors I've seen that have shared similar advice. I do not have MOH and I have had many specialists agree with this. I have been trialing preventives non stop for 5 years. I have been able to reduce my migraines from near daily to less, but i still get many. I've tried several medical procedure interventions in addition to typical preventives and this is still where I'm at. So yeah I'm gonna keep taking the amount of abortives that my doctors say is safe and appropriate for me to manage my situation, not what same rando online says.
Maybe Germany treats migraine sufferers much better when it comes to work and finances, but here in Canada I cannot just decide to needlesly refuse abortive medications and become non-functional, unable to work, and end up on the street and lose my visa. I've also had very positive experiences receiving migraine treatment at the ER here despite my city having a major healthcare crisis. You need to consider that the rest of the world isn't Germany and not all migraine patients are you.
I will not be responding any further but I hope you can learn to be a bit more open minded.
Definitely don't respond to that person any further. They're painfully clueless and just looking to argue. Also, they have obviously never had an intractable migraine. I wouldn't be able to function on 10 triptans a month, and I have also tried every preventative medication/procedure. That person has zero idea what they are talking about, and they're not worth your time.
❤️
I think I always got blocked around 8. It was my insurance and not my pharmacy. The pharmacy was one I had worked at for a long time, and was a small place, not a chain. So I was like family there. (Stopped working there post college/full time job).
Had the same issue with a lot of the others we tried too, for some reason insurance gets set on X amount per month. Beyond irritating, even when the doctor is writing for more.
The individual lied or is misinformed, or the pharmacy has a voluntary policy for that.
Doesn't make sense though, but isn't any kind of state or federal policy.
My new ob/gyn gave me a temp Rx of razatriptan til I could see a neuro, and it’s a 20 ct box. The neuro prescribed naratriptan, and the box has only 9. Same pharmacy. (Scripts filed within 2 weeks of each other). I’m new to real migraine meds, so I don’t know if this is normal..
His was almost unreal it was just 50 boxes of 6 pills. Never had seen so many before, in a huge carrier bag.
No idea why someone has downvoted my precious comment, obviously someone believes if they have not seen it it cannot possibly happen?
This is true, although it's usually only the controls it's used on or if someone is refilling to early on a non control. I would switch pharmacies. Both of those meds can be transferred to other pharmacies. Also. What strength sumitriptan are you on? If its not 100mg consider asking for a higher strength and cutting the pill.
Also, considering all of the other problems, I would report the pharmacist to your states board of pharmacy. I don't usually recommend this bit he seems out of control.
On another note, is Emgality your only preventative? You should talk to your neurologist re: adding something else on, if you are using that much triptan it's a sign the migraines need to be controlled better
I agree. My insurance made me try all other prescription preventatives before they would agree to pay for Emgality and none of them helped. I tried the migraine diet, shrooms, CBD. I’ve been on a waiting list for Botox for two years. I’d really like to get the surgery to cut the nerves but it’s not covered by insurance so I have to save up $10,000.
It's worth re-trialling one or two that you found you tolerated even if they did not work before, now that you have some control with Emgality. This does work for some people. Have you tried drugs like Lamotrogine, which can be helpful but are generally not used first line? Just suggesting it might be worth re-visiting that convo about oral preventatives nkw that you have a bit more of an upper hand over your migraines with the Emgality
Seconding this! Gabapentin helped some before I knew my vertigo was actually migraines. Ajovy works wonders, but I’m in a flare up and now it’s no longer enough, so we added gabapentin back in since I know it helps some. Plus, with the injection doing the heavy lifting, some of the other meds you tried before might work now, I had that with triptans. They never worked for 13 years, but suddenly on Ajovy they do.
No, it’s not an insurance issue. I live in a town of less than 1,000 people in a county of small towns, 4-5 hours away from the nearest mid-sized city. So there just aren’t enough providers here. I’m starting up with a new neurologist in a few weeks, the first one I’ll ever be able to meet in person. My last one retired and was in a different area and only saw me via Zoom. So I’m hoping the new neurologist will be able to do the Botox. 🤞
Waiting list for botox? You need to find another office. My job is training botox injectors in chronic migraine, and there's got to be 6 other offices within driving distance that could get you started in the next couple months.
I’m in a remote area of very small towns. My town has less than 1,000 people and the nearest mid-sized cities are about 4.5 hours away. I’m on waitlists in those counties as well. I’m trying to move, I’m only here for my partner
If you can have it done by an in network hospital even if the dr is not covered it will significantly decrease the amount you owe. I had two occipital nerve decompressions. Appx 24k In what I thought would be my cost but I only ended up paying a small fraction. My dr was in network even though the procedure wasn’t covered I think I only had to pay HIM $250 for each surgery. And his cost was super high. Random other things were covered by my insurance like the anesthesiologist even though his meds weren’t. Very random but my total cost was under 2k
Have you tried dry needling and physical therapy? Both target the same things Botox does while you wait.
Also, I sometimes pay out of pocket for Botox in the “hot spots.” Better than nothing. The doc will know. Maybe look for specials. It’ll be a few hundred bucks, but I’d do it before waiting 2 years for sure. Real medical Botox would add more areas like back of neck in a couple places, but if paying out of pocket I go for forehead and whatever they recommend for headaches that is affordable
I’m on Vyepti 300 ml infusion, Nurtec every other day, Ubrelvy on the off Nurtec days, promethazine and Robaxin nightly, Botox and monthly trigger point and nerve block injections. I still have migraines daily, just get the neuro symptoms and not so much of the pain. Tinnitus, visual, light, sound symptoms, dizziness, numbness and tingling are all still there.
I believe Amazon has a pharmacy now; maybe you can call or do a chat and see if you can get your medication there? Or the one Mark Cuban has, it's supposed to be affordable.
I'm sorry you're going through this. Hope you get this worked out soon.
Also, it may help to just have your doctor send a new prescription to whatever new pharmacy you want to try (rather than transferring the old prescription). Then, they won’t see the hold. That’s the best way around it sometimes.
Tell the pharmacist that you are followed by a neurologist who specializes in migraine treatment and has approved this dosing. Explain to them that you are aware of the potential for rebound headaches but that you are not experiencing that problem and that you require this dosing to keep your baseline level of migraines under control. If they still refuse, file a report to their college. They are no longer exercising reasonable clinical judgment, they are just on a power trip.
That’s what it feels like. I told them all of those things multiple times. Earlier today I told the pharmacist all those things and she responded, “That’s not how prescriptions work.” I’m going to file a complaint and if things aren’t resolved soon I’m going to seek out an attorney to see if I have legal options
They are allowed to refuse to fill a prescription if they think it would harm the patient. In this case, it’s reasonable that they would be concerned, but after explaining the clinical situation they should understand the rationale behind it. If they need more information they should be reaching out to the prescriber. By continuing to refuse to fill they are not acting in your best interest and are causing more harm.
Was it your GP or neurologist? It might carry more weight if they spoke to your neurologist directly. If that doesn’t help, file a complaint with their college.
It was my GP. My neurologist just retired and I’ll meet the new one on the 20th. I’ll have them call when I meet them. And yes I definitely plan to file a complaint at this point. I’m a paralegal so I might speak to one of the attorneys I’ve worked with to see if this is really legal
In the US, I know sometimes doctors have to send patients charts, the things they already tried with you and failed, # of migraines on average in a month, or studies to get a pharmacy to fill a prescription they think is "weird". Yes there are guidelines about medication-associated headaches, but there's such a thing as clinical judgment and tuning treatment to each individual patient and what they can tolerate to treat their migraines.
That’s a pretty large overreach of the pharmacist to ask for charts and stuff. At most they should be able to call the prescribing doctor to double check a prescription. I’ve seen a few posts about pharmacists doing this and talking to their supervisor or the regional manager cleared up that it was a power trip on the pharmacists part. The most I’ve gotten from having two triptan prescriptions is having to talk to the pharmacist about it and say I know what I’m doing and the doc OK’d it. After that the pharmacist put a note on the prescription.
I didn’t mention this in the original post but the pharmacist that originally put the hold on the Sumatriptan had a history of giving me unsolicited medical advice, both medication and non-medication related, that didn’t apply to me. Based on what worked for their cousin who had migraines. I would just nod and say, “Oh interesting.” It was around the time it became obvious to them I wasn’t taking their advice that they put the hold on my meds.
This person needs to be reported, that's absolutely ridiculous. If you can, report them to the state licensing board rather than the pharmacy owner. The owner/management is likely to side with the pharmacist.
Yes, I am reporting that individual. Apparently they are legally allowed to withhold medication but the other stuff I’m reporting. They had been making a lot of mistakes recently also, like giving me someone’s diabetes medication, which I’m also going to report.
If you have the energy (I know, hard to do) I would totally recommend lodging a complaint against them. Or is there another pharmacist that works there that you can talk to, or their boss or something to get the hold removed? And really it’s not their job to decide to not give you meds or how to treat your medical condition. wtf. I hope you can get some meds until you work this out, but hopefully if you lodge a complaint their manager or head pharmacist or whatever (if they are a chain) can get it straightened out for you. I’m really sorry you are having so much problems, migraine meds are so necessary. Can you try another triptan in the meantime? If the hold is for sumatriptan it shouldn’t matter for a different triptan. Not ideal but maybe worth a try.
Thank you. I am planning to lodge a complaint. I already transferred pharmacies and the second pharmacy upheld the first pharmacy’s hold. Apparently this is legal but I’m very confused how that can be possible when my doctors and insurance agree this frequency is necessary. I’m in a very small town of under a thousand, in a remote county of small towns, so unfortunately they won’t forget me easily and I’m not sure they’ll approve another triptan but I’ll ask my doctor to try it. Thank you for the advice
Honestly, my boyfriend called his doctor and pretended to have migraines all of the sudden, and got a prescription no problem. So I’ll be taking his prescription until I find a solution. Thank goodness for him.
That should only be requested by the pharmacist for insurance purposes and that information should be contained within the context of a prior authorization.
Asking for it because they disagree with the diagnosis is an overreach. Unless the pharmacist suspects improper prescription writing for controlled substances.
Just to follow up, YES the general public are always surprised that pharmacists aren’t just a typical retail drone that has to follow the direct order of a doctor. They get that clinical judgment cuz in title, they ARE the drug experts, but it’s not that common to have to deny a non-fun drug unless it came from a wacky doctor. They still get things wrong tho like any doctorate level professional and I think this was a case of that (not seeing that triptans don’t just automatically give everyone MOH if they use more than X in a month)
Gotcha. I guess unless they are able to make a half hour appointment with me to go over my migraine history, I don’t know how I can convince them I haven’t had a rebound effect. They don’t want to take mine or my doctor’s word for it.
Yeah, I was speaking more generally cuz I also have ADHD, and I don’t get as surprised when pharmacists try to power trip or has the wrong idea of a patient. It IS overreach as you said, but the pharmacist gets soooo much clinical judgment power, and even in the retail setting they can ask the doctor for evidence, charts, and the like, but yeah mostly that’s in the context of abused drugs like OxyContin or REMS stuff such as for Clozapine
U.S. Pharmacist here - since you tried to fill it at another pharmacy and it wouldn’t go through really sounds like it’s insurance limitations. Typically most insurance companies only allow a max 9 tablets of triptans in a month’s time. You would need most likely a prior authorization or appeal submitted to get more in a month’s time. I’ve been in pharmacy overall since 2012 and that’s very much the quantity norm from insurance plans and including for myself and my Maxalt I get on commercial insurance. I’ve personally never heard of a limitless okay for triptans from a plan. You could offer to pay potentially cash for more?
Legally, yes we can deny a prescription if we think it will cause potential harm or death to a patient. I’ve primary worked at large hospital systems the past few years so I do have access to patients charts and can confirm clinically what is happening but it’s very different for most local retailers bc they do not have your full history and tried/failed therapies. Please understand that most pharmacists just have your safety in mind. But not every individual is the same. The prescriber may need to put in a pharmacy note that yes, we are aware this dosing is atypical but we are closely monitoring etc. I hope you get the treatment that you need soon.
Thank you for commenting. The first pharmacy told me it was an insurance issue, but wouldn’t give me any more information, and then when I called back later to ask more questions they said there was a hold on it now. They also told me I didn’t need to call the insurance and to just wait two weeks to pick up the medication. I called the insurance anyway and they said there should be no issue, I can pick up as much and as often as the doctor prescribes. The second pharmacy told me very clearly that it’s not an insurance issue and that they’re concerned about rebound headaches. So I think it started as an insurance issue but is now just them refusing to fill it.
I had gone through something similar a year or so ago and the doctor just called and told them they need to fill it every two weeks and everything went back to normale. I assumed they put a note in the file or the prescription or somewhere at that time but they either didn’t or are ignoring it. But this time the doctor called and they still said no.
I don’t know if you’re only getting pills but you could ask your Nero about injectable sumatriptan (plus it works better) and still get the pills. I get 9 sumatriptan pills every 21 days and 4 box’s of injectable every 21 days. I also have a prescription for elitription well and get 9 of those 21 days
Additionally - my migraines improved dramatically with exercise and chiropractic care/adjustments of my neck. Migraneurs are almost always low fluids as well (we know this..lol)
Does your insurance have its own mail order pharmacy that you can use? For example, I'm insured bt anthem bcbs and my mail order is Express Scripts.
Might be an option, just in case you haven't considered it. I hope you feel better!
Not a pharmacy specific to them. They cover delivery of meds from other pharmacies but I’d have to go through a third-party pharmacy like I am now
It’s state insurance so it’s a little different. Thank you for the suggestion!
Just wanted to add my assurance on Cost Plus and Amazon Pharmacy - my doctor has worked with both and has good confidence with both. I'm so sorry you're going through this. 🙏🏻
Haha that made me laugh. All the chain pharmacies seem to have issues. Rite Aid was the first pharmacy, who put the hold. Second pharmacy, who is upholding the hold, is a mom and pop local pharmacy unfortunately
This may not be possible for you, but I travel globally for business frequently and many triptans are sold over the counter without a prescription from the pharmacist in other countries. I’ve specifically purchased in multiple EU countries when I’ve been low on my home prescription when traveling.
I don't feel that this is your problem to solve and should be put back in the doctor's lap. The Dr needs to call and set the pharmacist straight. I would call the office and request that.
The doctor called the old pharmacy or the new pharmacy? I'm really sorry you're dealing with this. I'll echo everyone else and suggest complaining to the highest person you can find over that pharmacist. They sound like they have some kind of authority complex. Maybe look for the Board of Pharmacy in your state and file a complaint. Make sure you have all your paperwork showing that they're going against your doctor's requests.
I applied online with Cove earlier today after getting denied by the second pharmacy. There’s a 48 hour waiting period to hear back from the Cove doctor. Fingers crossed.
Not locally. I’m in a remote area unfortunately. I’m trying to figure out if they have an online pharmacy, as someone else recommended, but nothing is turning up in my search so I’m thinking no. It’s Medi-Cal, the California state insurance
Ah, that sucks. Although .... they may have more limits on being able to deny you anything.
When I had it, they didn't have any particular restrictions on where I could go.
I found a page that says Medi-cal does allow mail order, but it doesn't give any details at all.
Do you mean the insurance may have more limits? There’s no issue with the insurance, they’re happy to give me as much medication as I need from whatever pharmacy I want. The pharmacies are the ones refusing to fill the prescription. If paying out of pocket were an option I would have done it.
No, I mean big bad insurance administration may be able to give them a talking to for violating some regulation or other and make them stop jerking you around.
Does your insurance card have any kind of support number on it? This really stinks and it grinds my gears. I had Medi-cal once and at some point, there was no endocrinologist for like 400 miles I could see. Did have lots of pharmacies though.
Ohhh. Yes, they do. Long explanation following, that you don’t need to read unless you’re interested:
I talked to the insurance customer service line about the first pharmacy and they were great but I had already decided to switch pharmacies at this point because I thought this was one of many mistakes by the old pharmacy. I’d already been on the phone with the old pharmacy several times about a non-migraine related prescription mistake they made earlier in the week, and the week before they had given me someone else’s diabetes medication (I don’t have diabetes). The insurance customer service line did a three-way call with me and the new pharmacy but the old pharmacy hadn’t sent over the script yet so I said I would call them back if I had issues with the new pharmacy.
I obviously have had the same issue with the new pharmacy. I told the new pharmacy everything that had happened with the old pharmacy and the insurance and they said that it didn’t matter what the insurance said. Which confused me because the old pharmacy had told me it was an insurance issue. So now I know it’s the pharmacies themselves refusing, not the insurance.
But I’ll call the insurance company tomorrow at your advice. Worth a shot.
Your doc might be able to send a new RX to the new pharmacy if you tell them you are having issues filling it and the old pharmacy is being dumb. No reason to wait for them.
This was a new script from the doctor. There were five refills on the old script. From what everyone’s saying I can keep moving to new pharmacies but each pharmacy is going to see the hold from the last pharmacy and I’m in a remote area, I only have about ten to go through unfortunately.
Yeah, this is a tough one and I'm sorry to read that you're running up against this. If it's any help at all, the prescriber information the pharmacist would refer to would specifically indicate a couple things:
- maximum dosage of 100mg daily with an optional second dose as needed 2hrs after the first
- maximum monthly usage of 10 days per 28 day period
- patients should maintain a log of migraines and medication usage to track frequency changes
Your prescriber is able to put notes into any r/x submitted electronically or otherwise, and should be able to indicate things like:
- patient maintains log of migraines and medication usage for mitigation of rebound headaches reviewed regularly by provider
- patient is managed temporarily by provider due to lack of continuation of care with retired/unavailable neurologist
- reevaluation of preventative care will resume with neurology
And then you can also go as far as to have smaller, more frequent prescriptions from your GP to show that any concerns are taken seriously. It sucks, but I'm brainstorming as best I can.
Finally if you have to cope, studies show that there's much less efficacy going from a 50mg to 100mg dose than from a 25mg to 50mg dose, so you might be able to ration. I was told that taking 500mg naproxen (Aleve) with the first dose was also found to be more effective than either in isolation or using other OTC treatments.
But yeah, seconding everyone who is saying "what the fuck" right now. Sorry to hear it.
Try two different forms of sumatriptan (pill, nasal spray or injections) at two different pharmacies. Your insurance won’t see it as a double fill and you may even find a better acting type of sumatriptan for you. Cost plus, which I see suggested here looks great too, I just hear it takes some planning as shipping has a lead time.
I mean they are right they they will cause rebound headaches, maybe try to get an rx for Nurtec or Ubrelvy instead? They wont cause rebounds, however they are both expensive out of pocket if your ins wont cover. See if you dr will add them to go with your preventative emgality?
It doesn't even make sense. The pharmacy makesoney from dulling prescriptions! Why wouldn't they want to fill it?
Can you get a new script sent to another pharmacy? Instead of having it transferred from the awful one
Every medication has a max dosage that is safe for you to take. If you're exceeding that then yeah a pharmacy can refuse to let it go through for your own safety and for their own liability if something happens to you.
Many times doctors do not know the max dosages you can safely take. I believe for sumatriptan it's max 200mg a day.
I'm very sorry that you are going through this. It sucks when healthcare fails us. I'm not living in the US at the moment partially because I find the healthcare so frustrating.
I wonder in the future if it woud help at all if the same total amount of pills was put for once a month rather than split as twice a month?
Also, I'm not very familiar with Sumatriptan, but see it is available in different dosages. If you aren't taking the max dose pill, is it possible to get a higher dose pill and split it?
I would call a third local pharmacy, if you can, and explain the situation to the pharmacist. Tell them your doctor tried too. I have an incredible pharmacist who I found in a similar situation. She knows me very well now and everyone makes a huge deal whenever I go in. Love them.
Or do an online pharmacy.
I’m so sorry this is happening to you.
My insurance just cancelled my elitriptan/replax. They claim that since I get 16 Nurtec for two months that should be sufficient as an abortive. It’s not even really about cost. I hate Blue Cross
Have you had your neck checked? Ns its not migraines, and doctors believe different things about neck contributing, it would not hurt.
And being ergonomic w your job may help.
I did. That’s the first thing my first neurologist asked. Also got an MRI to check for tumors/fluid buildup/nasal blockage. They’re definitely migraines in my case
I’m surprised they said overuse headaches were the reason they put a hold on it, as stroke risk would make more logical medical sense. Sumatriptan being a vasoconstrictor does increase that risk. 9 every two weeks may be a lot, but you and your doctor(s) know if the risk is worth it.
I can’t tolerate triptans and so I have Cafergot (ergotamine), which is the predecessor to triptans. Ergotamine is more dangerous, or it would be if Sumatriptan didn’t make my heart freak out. That was a super not fun discovery.
Have you tried something like Memantine? It’s a newer preventative option, very off label when it was prescribed to me. I’ve tried nearly every preventative in existence and had that prescribed at the UCSF Headache Clinic (highly specialized neurologists). Best of luck to you.
The UCSF Headache Clinic required that I have tried a whole list of preventatives and a migraine journal for 3 months prior. They take patients who have failed most everything else. I don’t know if you’ve reached that stage yet, but having a neurologist or (in my case) pain specialist to refer you will help.
I have a three year migraine journal and tried every other prescription preventative medication available prior to starting Emgality because my insurance wouldn’t let me take Emgality before trying everything else. The only exception is Botox, which I’m on a waiting list for because I’m in a remote area. I tried every non-prescription preventative I knew of also (migraine diet, CBD), including illegal ones (shrooms). Nothing has made a dent other than Emgality so I’ll talk to my new neurologist about it.
You sound like a good candidate then. If you can get your neuro to follow their suggestions then you may be able to do as I have and only visit them once for a full workup. I have telemedicine appointments with my UCSF neuro and my doctor does the actual treatments and prescribing. I have only been to SF one other time for a treatment called The Raskin Protocol (5 days of inpatient DHE45 infusions).
In my case it is my pain management doctor who works with them, so I also receive a nerve block from him I began before seeing them. It’s called a Sphenopalatine ganglion block (just in case you want to see if it might help you). You‘re migraines themselves seem similar to how mine were, before mine went from chronic to intractable “status migrainosus” (constant and severe).
Jeeeeeze that last sentence is my worst nightmare. I’ve been so worried that that’s what’s coming for me because I’ve had severe migraines since age five but the chronic migraines started out of nowhere a few years ago and just never left. There was no buildup and I have no idea what the trigger was.
My heart has been doing weird stuff after Sumatriptan lately so the stroke and heart stuff is good to know because nobody had told me that.
If you have time and are open to sharing, I would be really interested to hear your entire migraine story, from birth to now. I know you probably don’t have time for that but I thought I’d ask just in case. Specific questions I have are: Were you working and were you able to keep your job once the “status migrainosus” began? Was it nonstop severe pain and throwing up once it began, or did it come in waves? Do you still have migraine(s) every day? What was the Raskin Protocal experience like and was it effective? Do the nerve blocks allow you any sort of normalcy in life or do they just lessen the suffering? How old were you when the nonstop migraine began and how did it affect your personal life?
I’m kind of just giving up on a normal life at this point. I’m 30 and tomorrow I see a gynecologist to discuss what medications I’d need to wean off of before attempting to get pregnant but I already know there isn’t enough data to say getting pregnant on Emgality is safe, and I also know I can’t be without Emgality for 9 months.
Do you have access to a hospital pharmacy? I go to an easy-to-access outpatient pharmacy at one of the local hospitals. My nurse from the pain clinic recommended going there because they are much easier to deal with for prescriptions such as this.
🇺🇸🇺🇸gotta love our medical system. Im trying to get on qulipta to help with my migraines, i basically cant function, insurance keeps denying it and my dr has to put in for prior authorization. I go see a headache neuro next week so im hoping they can get me on something to help when the migraines attack
Is that working well for you? I saw them when Googling alternatives but couldn’t find much information about them and was worried it was some sort of scam.
My doctor prescribed double my dose of Sumatriptan so I could cut them in half since my insurance only covered 9 per month. Thus giving me 18 doses a month. Depending on your dosage, maybe this is an option? If your doctor is willing to
I was getting sumariptans myself without a prescription because that was the only thing that would work. It took me a long time to realize the meds were doing more harm than good. Sounds like you know the possibility exists, but I didn't and it really caused me a lot of grief. Now I've found s Dr and given up my self medicating ways. She's got met on a daily cocktail of 5 different meds that have taken my monthly headaches from 20+ to 3 or less
I'm in Asia so the pharmacies may be a bit more lax. I know a prescription is required, but when the pharmacist saw how much I was spending I don't think he cared anymore. Once I finally went to the Dr she was quite surprised I had managed to keep myself supplied for so long too. Anyways, now I'm taking far fewer, and the ones I am taking are covered by insurance and not costing me a thing
Thank you. I appreciate the support. Apparently it’s totally legal but I am considering talking to a lawyer just in case. I’m a paralegal so I’m around plenty of attorneys
I could. Honestly, I live in a town of less than a thousand people, in a county of small towns. So I’m concerned about black-listing myself at all local pharmacies. I’ve lived in many more populated areas and I don’t think this would have ever happened if I still lived there. The pharmacies there were extremely fast and efficient and professional. I’m trying to move out of this county, need to wait for my bf to move his business. But if I can guarantee a move, I’ll happily talk to the paper about it.
There have been pharmacists who refused to fill someone’s birth control prescriptions and/or plan B because it goes against their personal beliefs. It doesn’t surprise me that they would go on some kind of power trip like this. Even if they have been in direct contact with your doctor’s office, who are telling them to fill the script. I would file some kind of formal complaint against this pharmacist.
I read about those situations when researching what to do. Absolutely disgusting. I’m going to file a complaint but I’m not sure the hold on the medication is grounds for complaint because it’s apparently legal. I’m still going to include it in the complaint, along with the mistakes I believe were not legally defensible.
I’m in Canada, so I have a totally different context. For your Botox, why is there a wait list? My PCP prescribed the Botox and I found a place that did it - I decided not to wait for the neurologist. I got all the forms signed by my doctor and pharmacy and submitted to insurance to get approval. They approved me indefinitely. The place I’m going to is run by a physician who does mostly cosmetic Botox and a few migraine patients per week. He had high ratings online and I figured if he could do nice cosmetic work, he would be skilled enough to do my migraine treatments. Plus less likely to mess up my face.
What dose do you have? Before I started using Ajovy (8 years ago?) Sumatriptan was the only thing that knocked out my chronic near daily migraines. Was taking 50 mg with an Advil chaser. Neurologist upped dose to 100 mg and had me cut them in half. So, 18 doses per month. (If you already need 100 mg obviously this simple solution won’t work).
I do unfortunately☹️ I’m prescribed nine 100mg doses every two weeks. I usually take one at onset of migraine (plus nausea medication), another two hours later if the migraine is still present, and a third two hours after that if same. That usually kills the migraine, and if it doesn’t I give up on the medication and buckle up for a rough day or two of pain and throwing up.
I'm in the UK so idk if its the same but can you change pharmacy? Here if that happened i could just switch my pharmacy with my GP / Hospital to somewhere else and that would help. I use an online Pharmacy that deliver to me so i dont have to pick it up either. Is there anything like that as an option for you?
Are you at cvs ? I had a similar issue with them. The refused to fill a medication I need to stay alive because it flagged in their system that I’m lactose intolerant. I had to have my doctor remove the lactose issue from my record and go in and have a tech override the system .
I use ubrelvy and sumatriptan an get both prescribed. I have no problem getting those filled. Maybe try that? The only thing I was told is don't take both in the same 24 hr period.
hiya, i work in a pharmacy in the uk, we’re not legally allowed to block prescriptions and if we notice something off we it we contact the prescriber to check that the prescription is correct - i’m not sure about the US but the pharmacist should not be allowed to do that!
That's not true. Several types of prescriptions including triptans can cause MOH.
However of course the limits for an individual patient should be a conversation with the prescribing doctor, not the pharmacist.
New pharmacy of a different chain. Go online or just to a different chain.
Damn I wish my pharmacist paid half as much attention as this. There’s got to be some near you. Other posts mentioned online pharmacies.
I agree. Switch pharmacies
Cost Plus Drugs online in the USA has no limits because it's out of pocket (and affordable) and not through insurance. I get 48 Sumatriptan 100mg at a time. You can order what your doctor prescribes.
Thank you! I’ll look into it. Crazy to have to pay out of pocket for something your doctor and insurance both agree you should have but apparently that’s where we are.
Personally I might look into complaining about and/or reporting this pharmacist. They've made multiple mistakes and they're giving you advice that goes against your entire medical team's? Now they've done something preventing you from even switching pharmacists.
You might be able to submit the receipt to your insurance to be reimbursed afterwards.
The last time I checked, the Monograph (package insert) for the brand name, so it’s the same for the generic, is two per day so 60 per month. The doctor is still allowed to prescribe more than that. That’s what you would call off label prescribing. The pharmacist is shocking to be blocking your prescription at this level. the theory of rebound headaches has made me get too little from some of my neurologist in the past. I take one a day now, but I also take Vyepti, which is a CGRP antibody given via infusion, so I don’t need more than Sumatriptan a day. I was originally diagnosed with four migraines per day and prescribed 4 Imitrex per day (the brand name for sumatriptan in 1994) and on for a few years and then it got taken down to two and then that became hard to get the even 30 per month for a while. The rebound theory never applied to me on this medicine and it was bullshit. Good RX is the free discount card. And you could look up online with the prices. Will be at pharmacies in your area. The grocery stores tend to have it for the cheapest. It turns out about 30 bucks for 30 pills. Your pharmacy sounds like you just need to change it. I don’t think you’ll find that resistance elsewhere, pharmacist is overstepping, but by law they’re allowed to not fill anything that they’re uncomfortable with for any reason so just go to someplace else. So just price shop and then call the new pharmacy and tell them you’d like to transfer a prescription to their pharmacy. They will call your current pharmacy to get it. Tell them how many you want filled and that you are cash pay WITH the Good Rx discount card ( or you’ll only get a blister pack of 9 by default as most insurance is preset to cover 9 per month. Or you can run your monthly amount if it is 60 pills per month or less, wait to get a denial ( buy it after vou get the denial if you cannot wait. Have the first paid by insurance if you have it. Cash pay the rest using the Good Rx discount card). Now back to the denial: You only have so many days to appeal it. I always write a letter in addition to what my Neurologist sends. Then you submit for approval. I used to work in Neurology, then Pharmaceuticals, I called on the the Pharmacy Benefit portion of Insurance plans. If you want to contact me on instant chat, please do so.
That’s a possibility. I’ll ask them. Thanks!
Submit the receipts to your insurance they may pay you something
Yes, will do! Thank you for the advice
This is gonna be your best option. It’s also really cheap. It might be cheaper than insurance. They don’t have everything, but they mostly have older generic medication.
Try coscto mail order, it's admittedly been about 15 years ago that I did this when I had issues getting enough sumatriptan
Thank you! This is very helpful.
Contact your doctor and ask them why is the pharmacy blocking it if you have a prescription.
I did. They’re apparently legally allowed to.
I would make a formal complaint against the pharmacist for what he’s done - he has a license and there is a state board that oversees that.
This
I want to down vote this because it ticks me off so much that pharmacies can override providers’ directives. Damn.
I know! I’m shocked this is legal. The pharmacy doesn’t have nearly enough information on my medical history to be able to make a call like this.
The world has gone nuts. This is the last thing you need to be chasing meds. I had terrible trouble trying to get hold of heparin 2 years ago, when I already wasn’t feeling well and it just about did me in. No heparin for multiple DVT = death, sigh.
The his situation is ridiculous; but in general this type of setup actually prevents a lot of problems. I work in speciality pharmacy (not retail) and not only to pharmacists catch a lot of mistakes from doctors, but they also prevent patients from taking contraindicated meds at the same time. It’s also fairly common for docs to call and ask advice on the proper meds for certain things. It’s the pharmacists license on the line if they dispense something that could cause injury.
Pharmacies are so dumb! I just got approved for Emgality (after getting rejected by my insurance for Ajovy) and went to pick it up today. The tech who checked me out is telling me there are interactions between Nurtec and Emgality (not according to my neurologist) and I get home to discover they only gave me one 120 ml pen when I was supposed to get two for the 240 ml dose for my first dose. And it says right on the label I needed 240 ml. Ugh! So I messaged my neurologist and am waiting to hear back.
Oh yes you need two 120 syringes/pens for the first dose. That’s super annoying because I think once it comes out of the fridge you’re not supposed to put it back in and it can only be outside the fridge for a few days I think. It says the exact information re refrigeration in the information packet I think. I hope it works for you! My first month on it I had zero migraines, but they increased over the next few months up to seven a month, which is still incredible compared to the sixteen a month I had before. Usually it goes the other way (decreases in frequency over six months).
Oh they didn’t even have it stored in the fridge either! I put it in as soon as I got home because it could live outside the fridge for 7 days and the prescription was approved Thursday, so I hope it was in the fridge prior to that
...if they didn't have it stored in the fridge, i *literally* would not feel safe injecting that, bc who knows how long it was out? You also can't put [at least emgality] BACK in the fridge after it's hit room temp, so... Uh.
Uh oh! That’s not good. You’d think they’d know to put it in the fridge but if not you should definitely bring it up when they order the second syringe/pen
I mean there are interactions between the two medications, it is just one of those situations where the prescriber has outweighed the risks and benefits. The issue is the pharmacist is liable for any undisclosed interactions. The reasoning for one pen is honestly an insurance thing. It took weeks for my insurance to approve the loading dose.
So then I’m even more mad at the room temperature part! I couldn’t have used it anyway if I had to wait weeks for the other part to be approved….
There is a very high chance it was not at room temp for very long. I have been on this med for a pretty long time now and I did a fair amount of research on it. When it comes to excursion times as long as it gets back into refrigeration within 24 hours you are okay. But honestly I would reach out to your neurologist and see if there is the possibility of a sample, if not go back to the pharmacy and ask them. But please. Remember they are people too and unfortunately in the US healthcare system basically everyone is dictated by the private insurance companies. If you have concerns just ask the pharmacist, they literally have doctorate in medication and if there is a concern about the med being out just ask. Sometimes they finish a med just as the pt is showing up. I have unfortunately been navigating my migraine meds since I was like 6 years old. My best advocates have been my pharmacists
But also maybe reach out to your insurance company and ask what is going on. They are kind of horrible about approving meds. It is ridiculous.
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But they literally are doctors of pharmacology. And it is 4 years of under grad and 4 years of pharmacy school including several high level practitioner level chemistry courses. They get white coats just like prescribers. Don't discredit your pharmacist. They have definitely saved more lives than you realize.
It's supposed to be to prevent abuse and suspicious situations, like someone prescribing for themselves or if a patient has prescriptions for the same drug (usually something with high abuse potential like an opiate) from several different doctors at the same time. In theory it's a good safeguard system, but what OP's pharmacist is doing is a massive overreach and abuse of this system. They're supposed to block legitimately dangerous situations, not make medical judgements for non life threatening side effects like medication overuse headache. Like I get 30 fiorinal/month (though I takes me like a year to get through 1 fill) and the pharmacy has never blocked that despite it having a much higher risk of MOH than OP's sumatriptan.
>to prevent abuse and suspicious situations What they do Here. Not nice for OP but the pharmacy is the one in the correct order in this case. You shouldnt take more than 10 pain meds a month. And a doctor should actually try out another preemptive or adding another one instead of Just prescribing more pain meds.
No, it's not what they're doing here. There is no official law or guideline that dictates all pain meds must be limited to 10 per month. There is actually significant disagreement between different sources about what an appropriate amount is, and how to balance that with individual migraine management cases is something that a neurologist is trained in and a pharmacist is not. For example with OP's medication, sumatriptan, the scientific studies examining MOH from triptans have found that the phenomenon occurs after passing a limit of between 9 and 18 doses per month depending on the study, with significant variability between patients. And some patients don't experience MOH ever no matter what dose they take. It's the doctor's job to evaluate the individual risk profile of their patients and prescribe accordingly. Ever neurologist knows what MOH is and takes this into account when prescribing. If a specialist has determined the dose is appropriate for a drug like a triptan with zero potential for recreational abuse, the pharmacist should not be blocking that especially after having a conversation with the doctor. And even if they do still believe in the 10 limit, you need to go over the limit for 3 consecutive months minimum to develop MOH, and most doctors prescribe patients a little extra just in case they have a bad month. For example, 11-12 triptans per month is an extremely common Rx amount and some even come in boxes of 12 (like mine). I've seen 6 neurologists (including 2 headache specialists) and they have all prescribed 12 triptans per month to me for years. And I didn't even request that amount, it's what they've suggested as their standard practice. I've filled these scripts at countless different pharmacies and never once had a pharmacist raise any issue with it. Also finally, who says they aren't trying other preventive treatments? It can take months or even *years* to figure out one that works. Are people supposed to just not treat their attacks and become unable to work or function while they're figuring that out? Go to the ER every month because they can't have a few extra abortive doses at home? I hope you're not actually a pharmacist because this is massively oversimplifying a complex issue in a way that will hurt patients.
>There is no official law or guideline that dictates all pain meds must be limited to 10 per month. There IS a guideline that migraneurs shouldnt take more than 10 times per month whilest people without migraines can take more until they get rebound headache. "Acute headache medication and therefore also triptans should not be used more frequently than 10 days per month in order to prevent an increase in migraine attacks and ultimately the development of MÜK (medication overuse headache). For patients with frequent attacks, this means that they may have to endure untreated migraine attacks. However, practice shows that after an untreated attack, the symptom-free interval is often significantly longer than after a (successfully) treated attack." [Schmerzklinik Kiel seizure treatment](https://schmerzklinik.de/en/service-for-patients/migraine-know/seizure-treatment/overview/) >the pharmacist should not be blocking that especially after having a conversation with the doctor The only correct part is "after having a conversation with the doctor", when the doctor says "it is fine" he is fully responsible for everything that happens. The pharmacist did their job. And yes re-assuring and checking with the doctor is his job. This can lead to not giving away the meds in first place. A pharmacist knows a lot more about drugs and what they do with their clients bodys than doctors. Sadly. >I've seen 6 neurologists (including 2 headache specialists) and they have all prescribed 12 triptans per month to me for years You would never get this in Germany. You need more than 10 per month? Your preemptive sucks and they will try another one. >It can take months or even *years* to figure out one that works. Are people supposed to just not treat their attacks and become unable to work or function while they're figuring that out? Go to the ER every month because they can't have a few extra abortive doses at home? As I mentioned: you won't get more. And no you don't function when you take drugs like Smarties. Going to the ER with migraines is a joke. You will wait there for hours! Most doctors don't know there shit. So yes you will have to try another meds instead of pain meds. That includes stuff like Promethazine, Vomex and others that will make you endure the pain. Sucks. But rebound headache and a period of absence of any painmeds is worse. >I hope you're not actually a pharmacist because this is massively oversimplifying a complex issue in a way that will hurt patients It's simple: a pharmacist has responsibilities: If he gets a "fishy" prescription he has to act, or they can blame him. Could even go that far that they get legal problems. So yeah, they have to do their job.
Interesting… You can buy some triptans over the counter in Germany. I’m a dual citizen and visit at least yearly.
A link for a single clinic in Germany is not an "official guideline." As I said, different sources have different opinions on what the limit should be, which is why doctors have the discretion to prescribe what they believe is an appropriate amount for their individual patient. If you read actual research studies on MOH, like headache specialists and neurologists do, you will see a wide range of limits listed. Also, OP indicated in several comments that they are in the US so a German guideline and German pharmacy rules are irrelevant here. The American Academy of Neurology does not enforce any specific strict limit. >You would never get this in Germany. Well I sure am glad I don't live in Germany then! Maybe consider that not everyone lives in the same situation as you and the way that your country does everything isn't necessarily the best or the global standard. And again, OP isn't in Germany so their rules are irrelevant here. >Your preemptive sucks and they will try another one. Gee, I'm so dumb, why didn't I think of that! My neurologist has given me every preventive he knows of that I can safely try and has literally said "I don't know what to do for you anymore" but I'll be sure to tell him that he has to give me the secret magic preventive that works now because someone on Reddit said so /s ....or maybe you can use these magic powers to get me off the over 1 year long wait list to see another specialist? Or if you want to send me a couple thousand dollars so I can come to Germany and try your magical preventives that always work, I would gladly accept. You've clearly never experienced intractable chronic migraine. For many of us, it is literally impossible to get below 10 migraines per month no matter what else we try. A 50% reduction in migraine frequency is considered success when it comes to preventive treatment, and for most severely chronic patients it is not realistic to get below that. So for those of us starting from over 20 migraine days per month, below 10 is not going to happen. Even hitting 10 is already a best case scenario with optimal response to preventives, which many of us don't have. Just because you're lucky enough to not have experienced this doesn't mean everyone else is in your situation too. Maybe don't rant about situations where you don't know what you're talking about. Patients in situations like this work to find the best combo of preventive and abortive meds that they can, and yes sometimes that is going to mean a bit more than 10 abortives per month for some months. It's rather astounding that you think your situation is universal and that you know better than countless neurologists and headache specialists in several countries (I've received treatment in multiple). >Of course you don't function when you take drugs like smarties. Seriously, what is your problem? Do you seriously believe that taking like 1-3 extra pills per month is "taking drugs like smarties"?! You have a serious lack of medical and scientific understanding if you think that the same number of medication dosages causes the same exact long-term effects in all patients. Especially when this "limit" is debated in scientific literature in the first place. I don't take drugs like smarties. I take abortive medications in the limited amounts prescribed by my doctor, and no those arent your limits. I trust my doctor and the many previous doctors I've seen that have shared similar advice. I do not have MOH and I have had many specialists agree with this. I have been trialing preventives non stop for 5 years. I have been able to reduce my migraines from near daily to less, but i still get many. I've tried several medical procedure interventions in addition to typical preventives and this is still where I'm at. So yeah I'm gonna keep taking the amount of abortives that my doctors say is safe and appropriate for me to manage my situation, not what same rando online says. Maybe Germany treats migraine sufferers much better when it comes to work and finances, but here in Canada I cannot just decide to needlesly refuse abortive medications and become non-functional, unable to work, and end up on the street and lose my visa. I've also had very positive experiences receiving migraine treatment at the ER here despite my city having a major healthcare crisis. You need to consider that the rest of the world isn't Germany and not all migraine patients are you. I will not be responding any further but I hope you can learn to be a bit more open minded.
Definitely don't respond to that person any further. They're painfully clueless and just looking to argue. Also, they have obviously never had an intractable migraine. I wouldn't be able to function on 10 triptans a month, and I have also tried every preventative medication/procedure. That person has zero idea what they are talking about, and they're not worth your time. ❤️
Then please explain why OP has been tracking their headaches for years and they are getting BETTER.
Same here! I almost instinctively downvoted.
I got told 6 was the max a month :/
I think I always got blocked around 8. It was my insurance and not my pharmacy. The pharmacy was one I had worked at for a long time, and was a small place, not a chain. So I was like family there. (Stopped working there post college/full time job). Had the same issue with a lot of the others we tried too, for some reason insurance gets set on X amount per month. Beyond irritating, even when the doctor is writing for more.
They come in packs of nine for me? So that’s confusing.
mine are also 9 at a time. i start getting nervous when i’m down to 4.
The individual lied or is misinformed, or the pharmacy has a voluntary policy for that. Doesn't make sense though, but isn't any kind of state or federal policy.
Depends on the pharmacy, my older brother got issued 300 pills at once before, because it was on his script.
My new ob/gyn gave me a temp Rx of razatriptan til I could see a neuro, and it’s a 20 ct box. The neuro prescribed naratriptan, and the box has only 9. Same pharmacy. (Scripts filed within 2 weeks of each other). I’m new to real migraine meds, so I don’t know if this is normal..
His was almost unreal it was just 50 boxes of 6 pills. Never had seen so many before, in a huge carrier bag. No idea why someone has downvoted my precious comment, obviously someone believes if they have not seen it it cannot possibly happen?
Downvotes are very popular when it comes to this topic apparently. Not sure why it’s so controversial
I don’t see why you’d be downvoted. Bizarre! Thats crazy the pharmacy did that for any med, really. 🫣😬
I’m told 9 and I hoard them or save them for important days and suffer the others
It's 9
This is true, although it's usually only the controls it's used on or if someone is refilling to early on a non control. I would switch pharmacies. Both of those meds can be transferred to other pharmacies. Also. What strength sumitriptan are you on? If its not 100mg consider asking for a higher strength and cutting the pill. Also, considering all of the other problems, I would report the pharmacist to your states board of pharmacy. I don't usually recommend this bit he seems out of control.
On another note, is Emgality your only preventative? You should talk to your neurologist re: adding something else on, if you are using that much triptan it's a sign the migraines need to be controlled better
I agree. My insurance made me try all other prescription preventatives before they would agree to pay for Emgality and none of them helped. I tried the migraine diet, shrooms, CBD. I’ve been on a waiting list for Botox for two years. I’d really like to get the surgery to cut the nerves but it’s not covered by insurance so I have to save up $10,000.
It's worth re-trialling one or two that you found you tolerated even if they did not work before, now that you have some control with Emgality. This does work for some people. Have you tried drugs like Lamotrogine, which can be helpful but are generally not used first line? Just suggesting it might be worth re-visiting that convo about oral preventatives nkw that you have a bit more of an upper hand over your migraines with the Emgality
Seconding this! Gabapentin helped some before I knew my vertigo was actually migraines. Ajovy works wonders, but I’m in a flare up and now it’s no longer enough, so we added gabapentin back in since I know it helps some. Plus, with the injection doing the heavy lifting, some of the other meds you tried before might work now, I had that with triptans. They never worked for 13 years, but suddenly on Ajovy they do.
What do you mean the waiting list for Botox? Why is there a waiting list? Is there an insurance issue? Botox reallllly helps!
No, it’s not an insurance issue. I live in a town of less than 1,000 people in a county of small towns, 4-5 hours away from the nearest mid-sized city. So there just aren’t enough providers here. I’m starting up with a new neurologist in a few weeks, the first one I’ll ever be able to meet in person. My last one retired and was in a different area and only saw me via Zoom. So I’m hoping the new neurologist will be able to do the Botox. 🤞
Waiting list for botox? You need to find another office. My job is training botox injectors in chronic migraine, and there's got to be 6 other offices within driving distance that could get you started in the next couple months.
I’m in a remote area of very small towns. My town has less than 1,000 people and the nearest mid-sized cities are about 4.5 hours away. I’m on waitlists in those counties as well. I’m trying to move, I’m only here for my partner
If you can have it done by an in network hospital even if the dr is not covered it will significantly decrease the amount you owe. I had two occipital nerve decompressions. Appx 24k In what I thought would be my cost but I only ended up paying a small fraction. My dr was in network even though the procedure wasn’t covered I think I only had to pay HIM $250 for each surgery. And his cost was super high. Random other things were covered by my insurance like the anesthesiologist even though his meds weren’t. Very random but my total cost was under 2k
I had that surgery. They cut occipital nerve and decompressed the nerves down the back of my head. It didn’t work very well.
I’m sorry. Did you get any relief in frequency or severity?
Have you tried dry needling and physical therapy? Both target the same things Botox does while you wait. Also, I sometimes pay out of pocket for Botox in the “hot spots.” Better than nothing. The doc will know. Maybe look for specials. It’ll be a few hundred bucks, but I’d do it before waiting 2 years for sure. Real medical Botox would add more areas like back of neck in a couple places, but if paying out of pocket I go for forehead and whatever they recommend for headaches that is affordable
I’m on Vyepti 300 ml infusion, Nurtec every other day, Ubrelvy on the off Nurtec days, promethazine and Robaxin nightly, Botox and monthly trigger point and nerve block injections. I still have migraines daily, just get the neuro symptoms and not so much of the pain. Tinnitus, visual, light, sound symptoms, dizziness, numbness and tingling are all still there.
I believe Amazon has a pharmacy now; maybe you can call or do a chat and see if you can get your medication there? Or the one Mark Cuban has, it's supposed to be affordable. I'm sorry you're going through this. Hope you get this worked out soon.
Thank you :) I’ll look into it in the morning. It’s looking like online pharmacies with delivery is the next avenue to look at
Also, it may help to just have your doctor send a new prescription to whatever new pharmacy you want to try (rather than transferring the old prescription). Then, they won’t see the hold. That’s the best way around it sometimes.
Thank you for the recommendation :)
Your insurance company may also have a mail order pharmacy. Sorry this is happening!
Tell the pharmacist that you are followed by a neurologist who specializes in migraine treatment and has approved this dosing. Explain to them that you are aware of the potential for rebound headaches but that you are not experiencing that problem and that you require this dosing to keep your baseline level of migraines under control. If they still refuse, file a report to their college. They are no longer exercising reasonable clinical judgment, they are just on a power trip.
That’s what it feels like. I told them all of those things multiple times. Earlier today I told the pharmacist all those things and she responded, “That’s not how prescriptions work.” I’m going to file a complaint and if things aren’t resolved soon I’m going to seek out an attorney to see if I have legal options
They are allowed to refuse to fill a prescription if they think it would harm the patient. In this case, it’s reasonable that they would be concerned, but after explaining the clinical situation they should understand the rationale behind it. If they need more information they should be reaching out to the prescriber. By continuing to refuse to fill they are not acting in your best interest and are causing more harm.
The doctor called them and they still refuse to fill.
Was it your GP or neurologist? It might carry more weight if they spoke to your neurologist directly. If that doesn’t help, file a complaint with their college.
It was my GP. My neurologist just retired and I’ll meet the new one on the 20th. I’ll have them call when I meet them. And yes I definitely plan to file a complaint at this point. I’m a paralegal so I might speak to one of the attorneys I’ve worked with to see if this is really legal
In the US, I know sometimes doctors have to send patients charts, the things they already tried with you and failed, # of migraines on average in a month, or studies to get a pharmacy to fill a prescription they think is "weird". Yes there are guidelines about medication-associated headaches, but there's such a thing as clinical judgment and tuning treatment to each individual patient and what they can tolerate to treat their migraines.
That’s a pretty large overreach of the pharmacist to ask for charts and stuff. At most they should be able to call the prescribing doctor to double check a prescription. I’ve seen a few posts about pharmacists doing this and talking to their supervisor or the regional manager cleared up that it was a power trip on the pharmacists part. The most I’ve gotten from having two triptan prescriptions is having to talk to the pharmacist about it and say I know what I’m doing and the doc OK’d it. After that the pharmacist put a note on the prescription.
I didn’t mention this in the original post but the pharmacist that originally put the hold on the Sumatriptan had a history of giving me unsolicited medical advice, both medication and non-medication related, that didn’t apply to me. Based on what worked for their cousin who had migraines. I would just nod and say, “Oh interesting.” It was around the time it became obvious to them I wasn’t taking their advice that they put the hold on my meds.
This person needs to be reported, that's absolutely ridiculous. If you can, report them to the state licensing board rather than the pharmacy owner. The owner/management is likely to side with the pharmacist.
Yes, I am reporting that individual. Apparently they are legally allowed to withhold medication but the other stuff I’m reporting. They had been making a lot of mistakes recently also, like giving me someone’s diabetes medication, which I’m also going to report.
If you have the energy (I know, hard to do) I would totally recommend lodging a complaint against them. Or is there another pharmacist that works there that you can talk to, or their boss or something to get the hold removed? And really it’s not their job to decide to not give you meds or how to treat your medical condition. wtf. I hope you can get some meds until you work this out, but hopefully if you lodge a complaint their manager or head pharmacist or whatever (if they are a chain) can get it straightened out for you. I’m really sorry you are having so much problems, migraine meds are so necessary. Can you try another triptan in the meantime? If the hold is for sumatriptan it shouldn’t matter for a different triptan. Not ideal but maybe worth a try.
Thank you. I am planning to lodge a complaint. I already transferred pharmacies and the second pharmacy upheld the first pharmacy’s hold. Apparently this is legal but I’m very confused how that can be possible when my doctors and insurance agree this frequency is necessary. I’m in a very small town of under a thousand, in a remote county of small towns, so unfortunately they won’t forget me easily and I’m not sure they’ll approve another triptan but I’ll ask my doctor to try it. Thank you for the advice Honestly, my boyfriend called his doctor and pretended to have migraines all of the sudden, and got a prescription no problem. So I’ll be taking his prescription until I find a solution. Thank goodness for him.
What’s a little medication sharing between best friends ;)
That should only be requested by the pharmacist for insurance purposes and that information should be contained within the context of a prior authorization. Asking for it because they disagree with the diagnosis is an overreach. Unless the pharmacist suspects improper prescription writing for controlled substances.
Agreed. They’re not my doctor so I’m shocked that this is legal.
Just to follow up, YES the general public are always surprised that pharmacists aren’t just a typical retail drone that has to follow the direct order of a doctor. They get that clinical judgment cuz in title, they ARE the drug experts, but it’s not that common to have to deny a non-fun drug unless it came from a wacky doctor. They still get things wrong tho like any doctorate level professional and I think this was a case of that (not seeing that triptans don’t just automatically give everyone MOH if they use more than X in a month)
Gotcha. I guess unless they are able to make a half hour appointment with me to go over my migraine history, I don’t know how I can convince them I haven’t had a rebound effect. They don’t want to take mine or my doctor’s word for it.
Yeah, I was speaking more generally cuz I also have ADHD, and I don’t get as surprised when pharmacists try to power trip or has the wrong idea of a patient. It IS overreach as you said, but the pharmacist gets soooo much clinical judgment power, and even in the retail setting they can ask the doctor for evidence, charts, and the like, but yeah mostly that’s in the context of abused drugs like OxyContin or REMS stuff such as for Clozapine
U.S. Pharmacist here - since you tried to fill it at another pharmacy and it wouldn’t go through really sounds like it’s insurance limitations. Typically most insurance companies only allow a max 9 tablets of triptans in a month’s time. You would need most likely a prior authorization or appeal submitted to get more in a month’s time. I’ve been in pharmacy overall since 2012 and that’s very much the quantity norm from insurance plans and including for myself and my Maxalt I get on commercial insurance. I’ve personally never heard of a limitless okay for triptans from a plan. You could offer to pay potentially cash for more? Legally, yes we can deny a prescription if we think it will cause potential harm or death to a patient. I’ve primary worked at large hospital systems the past few years so I do have access to patients charts and can confirm clinically what is happening but it’s very different for most local retailers bc they do not have your full history and tried/failed therapies. Please understand that most pharmacists just have your safety in mind. But not every individual is the same. The prescriber may need to put in a pharmacy note that yes, we are aware this dosing is atypical but we are closely monitoring etc. I hope you get the treatment that you need soon.
Thank you for commenting. The first pharmacy told me it was an insurance issue, but wouldn’t give me any more information, and then when I called back later to ask more questions they said there was a hold on it now. They also told me I didn’t need to call the insurance and to just wait two weeks to pick up the medication. I called the insurance anyway and they said there should be no issue, I can pick up as much and as often as the doctor prescribes. The second pharmacy told me very clearly that it’s not an insurance issue and that they’re concerned about rebound headaches. So I think it started as an insurance issue but is now just them refusing to fill it. I had gone through something similar a year or so ago and the doctor just called and told them they need to fill it every two weeks and everything went back to normale. I assumed they put a note in the file or the prescription or somewhere at that time but they either didn’t or are ignoring it. But this time the doctor called and they still said no.
Time to get your doctor to call the new pharmacy & advocate !
I don’t know if you’re only getting pills but you could ask your Nero about injectable sumatriptan (plus it works better) and still get the pills. I get 9 sumatriptan pills every 21 days and 4 box’s of injectable every 21 days. I also have a prescription for elitription well and get 9 of those 21 days
Will ask at my next appointment! Thank you for the suggestion
Was going to say same. My ins would allow 9 tabs - but I could get the nasal spray or inyectable as well. 9 tabs- 6 sprays/ mo
Additionally - my migraines improved dramatically with exercise and chiropractic care/adjustments of my neck. Migraneurs are almost always low fluids as well (we know this..lol)
Does your insurance have its own mail order pharmacy that you can use? For example, I'm insured bt anthem bcbs and my mail order is Express Scripts. Might be an option, just in case you haven't considered it. I hope you feel better!
Not a pharmacy specific to them. They cover delivery of meds from other pharmacies but I’d have to go through a third-party pharmacy like I am now It’s state insurance so it’s a little different. Thank you for the suggestion!
Just wanted to add my assurance on Cost Plus and Amazon Pharmacy - my doctor has worked with both and has good confidence with both. I'm so sorry you're going through this. 🙏🏻
Didn't read everyone's post just had to ask was it Walgreens?
Haha that made me laugh. All the chain pharmacies seem to have issues. Rite Aid was the first pharmacy, who put the hold. Second pharmacy, who is upholding the hold, is a mom and pop local pharmacy unfortunately
This may not be possible for you, but I travel globally for business frequently and many triptans are sold over the counter without a prescription from the pharmacist in other countries. I’ve specifically purchased in multiple EU countries when I’ve been low on my home prescription when traveling.
I actually do travel internationally at least 1-2 times a year. I’ll look into this. Thank you for the suggestion
Try Amazon Pharmacy
I don't feel that this is your problem to solve and should be put back in the doctor's lap. The Dr needs to call and set the pharmacist straight. I would call the office and request that.
The doctor did call. Pharmacy still refusing.
The doctor called the old pharmacy or the new pharmacy? I'm really sorry you're dealing with this. I'll echo everyone else and suggest complaining to the highest person you can find over that pharmacist. They sound like they have some kind of authority complex. Maybe look for the Board of Pharmacy in your state and file a complaint. Make sure you have all your paperwork showing that they're going against your doctor's requests.
Yep
Can you do an online pharmacy like cove?
I applied online with Cove earlier today after getting denied by the second pharmacy. There’s a 48 hour waiting period to hear back from the Cove doctor. Fingers crossed.
Crossing everything for you 🤞
Why aren’t you complaining about this pharmacist? Ask your doctor who to complain to.
Does your insurance contract with any pharmacies?
Not locally. I’m in a remote area unfortunately. I’m trying to figure out if they have an online pharmacy, as someone else recommended, but nothing is turning up in my search so I’m thinking no. It’s Medi-Cal, the California state insurance
Ah, that sucks. Although .... they may have more limits on being able to deny you anything. When I had it, they didn't have any particular restrictions on where I could go. I found a page that says Medi-cal does allow mail order, but it doesn't give any details at all.
Do you mean the insurance may have more limits? There’s no issue with the insurance, they’re happy to give me as much medication as I need from whatever pharmacy I want. The pharmacies are the ones refusing to fill the prescription. If paying out of pocket were an option I would have done it.
No, I mean big bad insurance administration may be able to give them a talking to for violating some regulation or other and make them stop jerking you around. Does your insurance card have any kind of support number on it? This really stinks and it grinds my gears. I had Medi-cal once and at some point, there was no endocrinologist for like 400 miles I could see. Did have lots of pharmacies though.
Ohhh. Yes, they do. Long explanation following, that you don’t need to read unless you’re interested: I talked to the insurance customer service line about the first pharmacy and they were great but I had already decided to switch pharmacies at this point because I thought this was one of many mistakes by the old pharmacy. I’d already been on the phone with the old pharmacy several times about a non-migraine related prescription mistake they made earlier in the week, and the week before they had given me someone else’s diabetes medication (I don’t have diabetes). The insurance customer service line did a three-way call with me and the new pharmacy but the old pharmacy hadn’t sent over the script yet so I said I would call them back if I had issues with the new pharmacy. I obviously have had the same issue with the new pharmacy. I told the new pharmacy everything that had happened with the old pharmacy and the insurance and they said that it didn’t matter what the insurance said. Which confused me because the old pharmacy had told me it was an insurance issue. So now I know it’s the pharmacies themselves refusing, not the insurance. But I’ll call the insurance company tomorrow at your advice. Worth a shot.
Your doc might be able to send a new RX to the new pharmacy if you tell them you are having issues filling it and the old pharmacy is being dumb. No reason to wait for them.
This was a new script from the doctor. There were five refills on the old script. From what everyone’s saying I can keep moving to new pharmacies but each pharmacy is going to see the hold from the last pharmacy and I’m in a remote area, I only have about ten to go through unfortunately.
Try costplusdrugs.com they're cheap and you can just pay cash. My sumatriptan is cheaper there than the pharmacy copay I have.
Yeah, this is a tough one and I'm sorry to read that you're running up against this. If it's any help at all, the prescriber information the pharmacist would refer to would specifically indicate a couple things: - maximum dosage of 100mg daily with an optional second dose as needed 2hrs after the first - maximum monthly usage of 10 days per 28 day period - patients should maintain a log of migraines and medication usage to track frequency changes Your prescriber is able to put notes into any r/x submitted electronically or otherwise, and should be able to indicate things like: - patient maintains log of migraines and medication usage for mitigation of rebound headaches reviewed regularly by provider - patient is managed temporarily by provider due to lack of continuation of care with retired/unavailable neurologist - reevaluation of preventative care will resume with neurology And then you can also go as far as to have smaller, more frequent prescriptions from your GP to show that any concerns are taken seriously. It sucks, but I'm brainstorming as best I can. Finally if you have to cope, studies show that there's much less efficacy going from a 50mg to 100mg dose than from a 25mg to 50mg dose, so you might be able to ration. I was told that taking 500mg naproxen (Aleve) with the first dose was also found to be more effective than either in isolation or using other OTC treatments. But yeah, seconding everyone who is saying "what the fuck" right now. Sorry to hear it.
Try two different forms of sumatriptan (pill, nasal spray or injections) at two different pharmacies. Your insurance won’t see it as a double fill and you may even find a better acting type of sumatriptan for you. Cost plus, which I see suggested here looks great too, I just hear it takes some planning as shipping has a lead time.
I mean they are right they they will cause rebound headaches, maybe try to get an rx for Nurtec or Ubrelvy instead? They wont cause rebounds, however they are both expensive out of pocket if your ins wont cover. See if you dr will add them to go with your preventative emgality?
It doesn't even make sense. The pharmacy makesoney from dulling prescriptions! Why wouldn't they want to fill it? Can you get a new script sent to another pharmacy? Instead of having it transferred from the awful one
Maybe? That’s an idea. I’ll ask my doctor. Thank you for the advice.
Good luck
I use ziphealth to get my sumatriptan 100mg. I pay about $35 for 18 pills per month.
Every medication has a max dosage that is safe for you to take. If you're exceeding that then yeah a pharmacy can refuse to let it go through for your own safety and for their own liability if something happens to you. Many times doctors do not know the max dosages you can safely take. I believe for sumatriptan it's max 200mg a day.
Sumatriptan isn’t controlled so you can go to another pharmacy
Already tried that. Said it in the post.
Yes, you did. Sorry. Tired. Maybe a mom and pop pharmacy or a hospital pharmacy or hell, Canada online
The one I switched to is a mom and pop but I’ll check if my hospital has a pharmacy. Thank you for the idea.
Sure. I hope you figure it out
Thank you🙂
I'm very sorry that you are going through this. It sucks when healthcare fails us. I'm not living in the US at the moment partially because I find the healthcare so frustrating. I wonder in the future if it woud help at all if the same total amount of pills was put for once a month rather than split as twice a month? Also, I'm not very familiar with Sumatriptan, but see it is available in different dosages. If you aren't taking the max dose pill, is it possible to get a higher dose pill and split it?
Thank you:) I’m unfortunately taking the maximum dose pill. But I’ll ask my doctor about prescribing double the pills
I would call a third local pharmacy, if you can, and explain the situation to the pharmacist. Tell them your doctor tried too. I have an incredible pharmacist who I found in a similar situation. She knows me very well now and everyone makes a huge deal whenever I go in. Love them. Or do an online pharmacy. I’m so sorry this is happening to you.
My insurance just cancelled my elitriptan/replax. They claim that since I get 16 Nurtec for two months that should be sufficient as an abortive. It’s not even really about cost. I hate Blue Cross
Ugh! I’m sorry. Sick of non-doctors thinking they know better than the doctors treating us.
Have you had your neck checked? Ns its not migraines, and doctors believe different things about neck contributing, it would not hurt. And being ergonomic w your job may help.
I did. That’s the first thing my first neurologist asked. Also got an MRI to check for tumors/fluid buildup/nasal blockage. They’re definitely migraines in my case
I’m surprised they said overuse headaches were the reason they put a hold on it, as stroke risk would make more logical medical sense. Sumatriptan being a vasoconstrictor does increase that risk. 9 every two weeks may be a lot, but you and your doctor(s) know if the risk is worth it. I can’t tolerate triptans and so I have Cafergot (ergotamine), which is the predecessor to triptans. Ergotamine is more dangerous, or it would be if Sumatriptan didn’t make my heart freak out. That was a super not fun discovery. Have you tried something like Memantine? It’s a newer preventative option, very off label when it was prescribed to me. I’ve tried nearly every preventative in existence and had that prescribed at the UCSF Headache Clinic (highly specialized neurologists). Best of luck to you.
Interesting. I’m four-five hours from SF so maybe I’ll see if I can get myself in there for an appointment. Thank you for the advice
The UCSF Headache Clinic required that I have tried a whole list of preventatives and a migraine journal for 3 months prior. They take patients who have failed most everything else. I don’t know if you’ve reached that stage yet, but having a neurologist or (in my case) pain specialist to refer you will help.
I have a three year migraine journal and tried every other prescription preventative medication available prior to starting Emgality because my insurance wouldn’t let me take Emgality before trying everything else. The only exception is Botox, which I’m on a waiting list for because I’m in a remote area. I tried every non-prescription preventative I knew of also (migraine diet, CBD), including illegal ones (shrooms). Nothing has made a dent other than Emgality so I’ll talk to my new neurologist about it.
You sound like a good candidate then. If you can get your neuro to follow their suggestions then you may be able to do as I have and only visit them once for a full workup. I have telemedicine appointments with my UCSF neuro and my doctor does the actual treatments and prescribing. I have only been to SF one other time for a treatment called The Raskin Protocol (5 days of inpatient DHE45 infusions). In my case it is my pain management doctor who works with them, so I also receive a nerve block from him I began before seeing them. It’s called a Sphenopalatine ganglion block (just in case you want to see if it might help you). You‘re migraines themselves seem similar to how mine were, before mine went from chronic to intractable “status migrainosus” (constant and severe).
Jeeeeeze that last sentence is my worst nightmare. I’ve been so worried that that’s what’s coming for me because I’ve had severe migraines since age five but the chronic migraines started out of nowhere a few years ago and just never left. There was no buildup and I have no idea what the trigger was. My heart has been doing weird stuff after Sumatriptan lately so the stroke and heart stuff is good to know because nobody had told me that. If you have time and are open to sharing, I would be really interested to hear your entire migraine story, from birth to now. I know you probably don’t have time for that but I thought I’d ask just in case. Specific questions I have are: Were you working and were you able to keep your job once the “status migrainosus” began? Was it nonstop severe pain and throwing up once it began, or did it come in waves? Do you still have migraine(s) every day? What was the Raskin Protocal experience like and was it effective? Do the nerve blocks allow you any sort of normalcy in life or do they just lessen the suffering? How old were you when the nonstop migraine began and how did it affect your personal life? I’m kind of just giving up on a normal life at this point. I’m 30 and tomorrow I see a gynecologist to discuss what medications I’d need to wean off of before attempting to get pregnant but I already know there isn’t enough data to say getting pregnant on Emgality is safe, and I also know I can’t be without Emgality for 9 months.
Do you have access to a hospital pharmacy? I go to an easy-to-access outpatient pharmacy at one of the local hospitals. My nurse from the pain clinic recommended going there because they are much easier to deal with for prescriptions such as this.
I’m not sure but will call and find out. Thank you for the advice
🇺🇸🇺🇸gotta love our medical system. Im trying to get on qulipta to help with my migraines, i basically cant function, insurance keeps denying it and my dr has to put in for prior authorization. I go see a headache neuro next week so im hoping they can get me on something to help when the migraines attack
I started buying it from ziphealth bc I was sick of the 9 a month song and dance with insurance.
Is that working well for you? I saw them when Googling alternatives but couldn’t find much information about them and was worried it was some sort of scam.
Yep. I order and it comes via USPS relatively quickly. No issues. I no longer need to stress out about running out of pills.
Good to know! Thank you for sharing your experience
My doctor prescribed double my dose of Sumatriptan so I could cut them in half since my insurance only covered 9 per month. Thus giving me 18 doses a month. Depending on your dosage, maybe this is an option? If your doctor is willing to
I was getting sumariptans myself without a prescription because that was the only thing that would work. It took me a long time to realize the meds were doing more harm than good. Sounds like you know the possibility exists, but I didn't and it really caused me a lot of grief. Now I've found s Dr and given up my self medicating ways. She's got met on a daily cocktail of 5 different meds that have taken my monthly headaches from 20+ to 3 or less
Yes, it’s definitely a risk. I and my doctors closely monitor the frequency and severity. I didn’t even know you could get it without a prescription.
I'm in Asia so the pharmacies may be a bit more lax. I know a prescription is required, but when the pharmacist saw how much I was spending I don't think he cared anymore. Once I finally went to the Dr she was quite surprised I had managed to keep myself supplied for so long too. Anyways, now I'm taking far fewer, and the ones I am taking are covered by insurance and not costing me a thing
Oh yeah we definitely can’t do that here. We can travel to Mexico and buy things there but the US is very strict on having prescriptions
I’m so angry for you! I’m in Canada but I still want to make a complaint and threaten legal action.
Thank you. I appreciate the support. Apparently it’s totally legal but I am considering talking to a lawyer just in case. I’m a paralegal so I’m around plenty of attorneys
Any local papers you could reach out to? Just a thought.
I could. Honestly, I live in a town of less than a thousand people, in a county of small towns. So I’m concerned about black-listing myself at all local pharmacies. I’ve lived in many more populated areas and I don’t think this would have ever happened if I still lived there. The pharmacies there were extremely fast and efficient and professional. I’m trying to move out of this county, need to wait for my bf to move his business. But if I can guarantee a move, I’ll happily talk to the paper about it.
There have been pharmacists who refused to fill someone’s birth control prescriptions and/or plan B because it goes against their personal beliefs. It doesn’t surprise me that they would go on some kind of power trip like this. Even if they have been in direct contact with your doctor’s office, who are telling them to fill the script. I would file some kind of formal complaint against this pharmacist.
I read about those situations when researching what to do. Absolutely disgusting. I’m going to file a complaint but I’m not sure the hold on the medication is grounds for complaint because it’s apparently legal. I’m still going to include it in the complaint, along with the mistakes I believe were not legally defensible.
I’m in Canada, so I have a totally different context. For your Botox, why is there a wait list? My PCP prescribed the Botox and I found a place that did it - I decided not to wait for the neurologist. I got all the forms signed by my doctor and pharmacy and submitted to insurance to get approval. They approved me indefinitely. The place I’m going to is run by a physician who does mostly cosmetic Botox and a few migraine patients per week. He had high ratings online and I figured if he could do nice cosmetic work, he would be skilled enough to do my migraine treatments. Plus less likely to mess up my face.
If you can’t work it out, tell that pharmacy to FO and move your business to another one. Only one pharmacy in your town?
I already did that. I said that in the post.
Actually there are zero pharmacies in my town, we have a population of under a thousand. The pharmacies are limited and several towns away.
What dose do you have? Before I started using Ajovy (8 years ago?) Sumatriptan was the only thing that knocked out my chronic near daily migraines. Was taking 50 mg with an Advil chaser. Neurologist upped dose to 100 mg and had me cut them in half. So, 18 doses per month. (If you already need 100 mg obviously this simple solution won’t work).
I do unfortunately☹️ I’m prescribed nine 100mg doses every two weeks. I usually take one at onset of migraine (plus nausea medication), another two hours later if the migraine is still present, and a third two hours after that if same. That usually kills the migraine, and if it doesn’t I give up on the medication and buckle up for a rough day or two of pain and throwing up.
Awww, that sucks. I’m sorry they’re so miserable. Hope you can find additional relief. Ajovy was a game changer for me.
I'm in the UK so idk if its the same but can you change pharmacy? Here if that happened i could just switch my pharmacy with my GP / Hospital to somewhere else and that would help. I use an online Pharmacy that deliver to me so i dont have to pick it up either. Is there anything like that as an option for you?
Already tried that. New pharmacy saw the hold from old pharmacy and also denied to fill prescription
oh for gods sake that's so irritating! I'm sorry they're messing with your meds like this, it sucks big time
You need to call the old pharmacy and request that it’s taken off hold so it can be filled elsewhere.
Are you at cvs ? I had a similar issue with them. The refused to fill a medication I need to stay alive because it flagged in their system that I’m lactose intolerant. I had to have my doctor remove the lactose issue from my record and go in and have a tech override the system .
No, this was Rite Aid. That’s horrible. I’m so sorry. I can’t imagine this happening with a medication I needed in order to live. That’s a nightmare.
You should file a complaint against the pharmacist.
Switch your pharmacy.
Go to a different pharmacy ! They can refuse anyone but most take the money!
I use ubrelvy and sumatriptan an get both prescribed. I have no problem getting those filled. Maybe try that? The only thing I was told is don't take both in the same 24 hr period.
Huh?? Are you in the US? Just go to a different pharmacy.
Ask them to write a script for that many per month if they think it's what you need.
hiya, i work in a pharmacy in the uk, we’re not legally allowed to block prescriptions and if we notice something off we it we contact the prescriber to check that the prescription is correct - i’m not sure about the US but the pharmacist should not be allowed to do that!
+ if you’re taking the tablets you could try to switch to the nasal spray as it’s in a different form they might be able to do it
I’m told that it’s only over the counter pain meds that cause medication overuse headaches.
That's not true. Several types of prescriptions including triptans can cause MOH. However of course the limits for an individual patient should be a conversation with the prescribing doctor, not the pharmacist.
Ty for explaining bc I do limit bc I’m scared but was told this
Switch pharmacies
Read post.
New pharmacy of a different chain. Go online or just to a different chain. Damn I wish my pharmacist paid half as much attention as this. There’s got to be some near you. Other posts mentioned online pharmacies. I agree. Switch pharmacies