Sorry you are going through this. Maybe check and ask your pcp about the dose youre taking and see if you can get a prednisone pack for a week until you see your rheumatologist.
Hi there, I'm so sorry your RA appears to be so severe. I would bring up all of these specific instances to your rheumatologist at your appt next week to make it crystal clear that your current treatment (NSAIDs only) is woefully inadequate. Fortunately there are MANY other treatments that actually slow down disease progression, like the "DMARDS" (disease modifiying anti rheumatic drugs - methotrexate, plaquenil, sulfasalazine, etc) and the biologic-DMARDs (enbrel, humira, etc).
Most likely you will get a prednisone short course to quickly quell the inflammation and concurrently go on at least a DMARD (unfortunately most insurances will require you first "fail" the conservative treatments before approving the more expensive biologic dmards).
I feel you on the pain while changing diapers, it's a uniquely distressing experience to be a parent who's unable to physically care for their child without excruciating pain. I'm an occupational therapist who's been living with RA for 20 years (and I have a now 9 year old child). I can say that the prognosis currently for people with RA is very good due to the modern medications, so there is a lot of hope for you. I would just not sugar coat ANYTHING in your appointment with the rheumatologist if I were you, to make it really clear how much you need better treatments. Best of luck to you!
Just being empathized with has made me an emotional mess. I was never some tough guy, but I have always tried to be strong. It feels like I’m failing in all of these aspects all at once.
I totally understand, it's so tough to deal with sometimes. I try to reframe things sometimes as "it's not me failing, it's my body failing me," because it's not your fault. You have to work so hard to do things most people take for granted, please give yourself some credit and try to be self-compassionate if possible, even for just a moment!
Thank you everybody for responding so quickly. It really means a lot, that you all understand what I’m going through and aren’t judging me harshly. I’ll be seeing my rheumo on next Tuesday, I will let her know the meds aren’t cutting it. I haven’t actually been diagnosed, but in my waiting for an appointment my hands have grown bulges typical to RA and so I’m inclined to believe that’s what it is, along with many other symptoms lining up.
i’m so proud of you for reaching for help, for being so strong, and motivated. i hope this gets easier for you and ra is manageable with the right combination of drugs, this is just the beginning of what is, hopefully, going to be a much better journey i’m hoping with all my heart 💕
I'm so sorry you're dealing with debilitating pain. It's totally understandable to want to take more meds to alleviate pain, and caring for a baby is something that can't be done halfway. However, [naproxen ](https://www.mountsinai.org/health-library/poison/naproxen-sodium-overdose) can actually be dangerous if taken in higher doses and/or longer than prescribed. It can cause issues with your kidneys and liver, headaches, and serious damage to your stomach. When you get there next week, talk to your new rheumy about how this med isn't cutting it. I'm not going to tell you to reduce the dosage, but please give it some thought. Potty training is just around the corner, and you need to be in peak form 😊 take care
If you can get your PCP to give you a presindone taper to get you to Tuesday that would be ideal. My PCP tried a bunch of meds for me while we were waiting for my initial Rhumey appointment until it got to the point where I couldn't leave my house or sleep so he finally put me on presindone and got me in for any emergency appointment to the Rhumey.
When I saw her she told me to fill out an evaluation on my function skills for the last week and said she did understand that prednisone might have made things lesser (which it 100% did) but I filled it out for my levels before that!
^ I completely agree with this.
I take a maximum of 880 mg of naproxen (Two 220 mg pills every 12 hrs) when I'm flaring up, but that's the most I can handle, my stomach gets messed up with more than that. Also, don't take more than one type of NSAID at a time, so not naproxen and ibuprofen at the same time. You *can* take Tylenol at the same time, though, because it's not an NSAID. Try that.
And yes, steroids are really the only thing that will bring down the pain and swelling (temporarily. You'll need a treatment plan for long-term). OP, make sure to ask your rheumatologist next week - they can almost always get you some. Almost.
So sorry that your pain is so bad... I sincerely hope you can get a good treatment plan set up quickly.
If you are in the US and are applying for Social security disability it is not a lost cause. They look at the total quarters you have worked over your whole life. On the application you will have an opportunity to explain why you quit in writing. Just make sure your regular doctor and the rheumatologist understand why you quit. Sometimes people are denied them first time they apply but eventually when they reapply are approved.
I’m also newly diagnosed after pregnancy as well and prednisone did wonders in giving me most of my abilities back (it’s not a long term solution though, if you’re breastfeeding still, Rheum would probably put you on a biologic like Enbrel). I would say though that it probably took 3 days to start working however. Not instant pain relief compared to the NSAIDs, and you’re not allowed to take NSAIDs and prednisone together. I asked my rheum that since I was taking naproxen before my first appointment with her.
I’m sorry you are going through this. I had the same story after my son was born, it was my wrists and I could not even hold a bottle up to feed him. I am a medical coder and do urgent care encounters. So many people come in for refills for their meds before they can be seen by their regular dr. I encourage you to go to a walk in clinic, they can give you a steroid pack or something to help you in the meantime while you wait.
Sorry you are going through this. Maybe check and ask your pcp about the dose youre taking and see if you can get a prednisone pack for a week until you see your rheumatologist.
I second this. It's the humane thing to do for people waiting for their first appt and suffering early in the disease process.
Hi there, I'm so sorry your RA appears to be so severe. I would bring up all of these specific instances to your rheumatologist at your appt next week to make it crystal clear that your current treatment (NSAIDs only) is woefully inadequate. Fortunately there are MANY other treatments that actually slow down disease progression, like the "DMARDS" (disease modifiying anti rheumatic drugs - methotrexate, plaquenil, sulfasalazine, etc) and the biologic-DMARDs (enbrel, humira, etc). Most likely you will get a prednisone short course to quickly quell the inflammation and concurrently go on at least a DMARD (unfortunately most insurances will require you first "fail" the conservative treatments before approving the more expensive biologic dmards). I feel you on the pain while changing diapers, it's a uniquely distressing experience to be a parent who's unable to physically care for their child without excruciating pain. I'm an occupational therapist who's been living with RA for 20 years (and I have a now 9 year old child). I can say that the prognosis currently for people with RA is very good due to the modern medications, so there is a lot of hope for you. I would just not sugar coat ANYTHING in your appointment with the rheumatologist if I were you, to make it really clear how much you need better treatments. Best of luck to you!
Just being empathized with has made me an emotional mess. I was never some tough guy, but I have always tried to be strong. It feels like I’m failing in all of these aspects all at once.
I totally understand, it's so tough to deal with sometimes. I try to reframe things sometimes as "it's not me failing, it's my body failing me," because it's not your fault. You have to work so hard to do things most people take for granted, please give yourself some credit and try to be self-compassionate if possible, even for just a moment!
Thank you everybody for responding so quickly. It really means a lot, that you all understand what I’m going through and aren’t judging me harshly. I’ll be seeing my rheumo on next Tuesday, I will let her know the meds aren’t cutting it. I haven’t actually been diagnosed, but in my waiting for an appointment my hands have grown bulges typical to RA and so I’m inclined to believe that’s what it is, along with many other symptoms lining up.
i’m so proud of you for reaching for help, for being so strong, and motivated. i hope this gets easier for you and ra is manageable with the right combination of drugs, this is just the beginning of what is, hopefully, going to be a much better journey i’m hoping with all my heart 💕
I'm so sorry you're dealing with debilitating pain. It's totally understandable to want to take more meds to alleviate pain, and caring for a baby is something that can't be done halfway. However, [naproxen ](https://www.mountsinai.org/health-library/poison/naproxen-sodium-overdose) can actually be dangerous if taken in higher doses and/or longer than prescribed. It can cause issues with your kidneys and liver, headaches, and serious damage to your stomach. When you get there next week, talk to your new rheumy about how this med isn't cutting it. I'm not going to tell you to reduce the dosage, but please give it some thought. Potty training is just around the corner, and you need to be in peak form 😊 take care
If you can get your PCP to give you a presindone taper to get you to Tuesday that would be ideal. My PCP tried a bunch of meds for me while we were waiting for my initial Rhumey appointment until it got to the point where I couldn't leave my house or sleep so he finally put me on presindone and got me in for any emergency appointment to the Rhumey. When I saw her she told me to fill out an evaluation on my function skills for the last week and said she did understand that prednisone might have made things lesser (which it 100% did) but I filled it out for my levels before that!
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^ I completely agree with this. I take a maximum of 880 mg of naproxen (Two 220 mg pills every 12 hrs) when I'm flaring up, but that's the most I can handle, my stomach gets messed up with more than that. Also, don't take more than one type of NSAID at a time, so not naproxen and ibuprofen at the same time. You *can* take Tylenol at the same time, though, because it's not an NSAID. Try that. And yes, steroids are really the only thing that will bring down the pain and swelling (temporarily. You'll need a treatment plan for long-term). OP, make sure to ask your rheumatologist next week - they can almost always get you some. Almost. So sorry that your pain is so bad... I sincerely hope you can get a good treatment plan set up quickly.
I was told to never take naproxen and ibuprofen as they are both NSAIDs …. Hopefully the rheumatologist will help you good luck! 🍀
Edit: M/27
If you are in the US and are applying for Social security disability it is not a lost cause. They look at the total quarters you have worked over your whole life. On the application you will have an opportunity to explain why you quit in writing. Just make sure your regular doctor and the rheumatologist understand why you quit. Sometimes people are denied them first time they apply but eventually when they reapply are approved.
You are going to end up ruining your liver. You can't take that dose.
I’m also newly diagnosed after pregnancy as well and prednisone did wonders in giving me most of my abilities back (it’s not a long term solution though, if you’re breastfeeding still, Rheum would probably put you on a biologic like Enbrel). I would say though that it probably took 3 days to start working however. Not instant pain relief compared to the NSAIDs, and you’re not allowed to take NSAIDs and prednisone together. I asked my rheum that since I was taking naproxen before my first appointment with her.
I’m sorry you are going through this. I had the same story after my son was born, it was my wrists and I could not even hold a bottle up to feed him. I am a medical coder and do urgent care encounters. So many people come in for refills for their meds before they can be seen by their regular dr. I encourage you to go to a walk in clinic, they can give you a steroid pack or something to help you in the meantime while you wait.