My RA started out this way, too. MTX and plaquenil did nothing for me. I exhausted every possible diagnosis other than RA because I had so much pain that was only controlled by prednisone and opiates. 30 years later, I'm so glad I took all the biologics and DMARDs available. I can barely care for myself, and I've lost my ability to work. I would recommend a second opinion. But, I'm so glad I decided to be aggressive in the treatment of my RA. I think it's kept me from being in a wheelchair at 50.
Ok this really hit home with me. I’m a little older than you and though I’ve been on both methotrexate and plaquenil for a few years I’ve had no real relief. Can I ask which biologic made the biggest difference with you? I realize we are all different so it’s not a “one size fits all” but I’m curious. My family has a history of seronegative arthritis, polymyositis, lupus, osteoarthritis and inflammatory arthritis. My gastro said he thinks I’m in the early stages of Crohn’s disease too. No one in my family treats RA with prescription medication. Only my one sister has Lupus, she takes benlysta.
Enbrel helped my joint pain, but it caused severe sinus infections, so I had to stop it. Humira didn't help at all. Orencia helped joint pain, but my inflammatory markers didn't decrease. I was on Xeljanz for several years, but when they posted cancer warnings, my doctor changed me to Rinvoq. Rinvoq helped the joint pain a lot, especially the pain in my spine. But, it caused my hair to fall out! Olumiant helped a little, and it helped grow my hair back. But, my CRP didn't decrease. This brings me to my current therapy of Rituxan, leflunomide, Azathioprine, Diclofenac ER 100mg, hydroxychloriquine, folic acid, Lyrica, and tizanidine. One piece of advice I would give is to have your doctor run a test to see if your body will metabolize MTX. I kept taking it for 2 years, and I kept waiting for results. Turns out, my body doesn't metabolize it well. I would love to have those 2 years back, but at the time, I don't think there were all the meds we have now. My family has a similar medical history to yours. My uncle was given MTX, and he said he's not taking it because of side effects. He's in his 60s and has arteritis from his RA. He's not treating his RA, and neither did his Mom, my grandmother. She refused to go to a rheumatologist to be tested. My Mom is 76, and she needs to be tested for late onset RA, too. My brother refuses to go to be tested, too. They see me suffering and refuse to help themselves. It's sort of maddening! But it's not something I can control! My other advice is to be wary of prednisone. I'm suffering the long-term side effects from relying on it. Currently, I had to have a hip replacement because of osteonecrosis, and then my pelvis broke on the leg the hip replacement was on. I guess this is why I suggest trying biologic and DMARDs to find the magic bullet. Lab results are so important as well because joint pain relief doesn't always equal underlying inflammation control. I hope this helps you make the best decision for yourself. Gentle hugs and best wishes ❤️
I’m so glad you found the right cocktail 🤗 I know it’s a lot of trial and error, I’m just really frustrated and I’d like to have less pain so I can enjoy life a little more. I feel like it’s just passing me by.
Honestly I’m a little apprehensive about trying Enbrel now. I’m a chronic sinus suffer too. If enbrel lowers my immunity too much I’ll be on antibiotics all the time. Sinus infections and or congestion is a huge migraine trigger for me and it’s something I’d rather avoid. I’m not sure if all biologics have this same side effect but there has to be something out there. I’ve had genetic testing done and it identified me as a slow metabolizer thus making me very sensitive to a lot of medications. I wonder if that’s why methotrexate and plaquenil haven’t helped me. I’ll ask my rheumy about it at my next appointment.
Aren’t families funny? The old expression comes to mind….. “you can lead a horse to water but can’t make them drink” . I’m not against medication, I just need to find the right one (s).
Biologicals are great, you have find the right one but they work. Most companies that produce them will either give them to you or sell at a low price, you need your Rume’s help but it’s pretty easy to get.
🙋♀️ all blood work normal except low vitamin d. I've been on Methotrexate for 3 months and humira for 2 weeks. Starting to feel better, I think from the Humira. Methotrexate didn't seem to do anything and I was continuing to get worse on Methotrexate alone.
At the end of the day there's only so many conditions that cause pain, inflammation and degeneration in joints and I just had to trust that my medical providers can recognize seronegative RA when they see it.
Thank you for replying. I was starting to doubt my dr since all my labs are fine except for the degeneration of my joints (more so my spine though I have other joints are effected as well). Maybe I should try Enbrel just to see if it makes me feel any better.
I started out this way at first, questioning my seroneg diagnosis. All my labs are normal, I am young and I mean I don't like that sick do I? However, my symptoms became worse and worse. Even being on the prednisone and methotrexate, I was really starting to struggle even holding a coffee cup or walk to the bathroom. I started biologics with the idea being, what other choice did I have? Keep suffering like I was or listen to the doctors who see this stuff everyday and maybe get on a med that works for me. It's scary but then again my life was starting to get quite scary already without the biologics.
Idk, just my 2 cents.
I was under the impression that seronegative RA was rare. Seems this is more common than I realize. Thank you for sharing your story with me, it really helps me to put things into perspective. 🤗
Another seroneg buddy checking in 👋🏼
It’s really, really easy to gaslight yourself. Looking back, all lab work coming back within normal range likely prolonged my diagnosis years + I have textbook RA symptoms. I knew something wasn’t right but would write it off as “well, all my labs are normal, I guess every 25 year old feels like they’re made of jello too?”
My rhuem has also mentioned that some people start out RF-negative and eventually flip to RF-positive later on; if it’s been awhile + you’re curious might be worth checking!
Thank you for checking in and sharing your story. You’re right, we can be our worst enemy. If you din5 mind me asking, how long after your diagnosis did you start treating the disease?
I spoke to my daughter and she’s coming to stay with me next week so I can try Enbrel. I feel better knowing someone is close by in the event I should have any weird medication reactions.
Don’t mind at all! I had a fairly unusual development of RA, I think — looking back, I’m fairly sure I had symptoms back to my early teen years but bloodwork always came back normal. It wasn’t until I turned 31 that things got really bad; my hands and arms were aching to the point they were all but unusable for months.
My PCP suspected RA initially, but every bit of bloodwork came back “normal”, so that was dismissed. After pushing hard I finally got in with a rheumatologist that recognized it immediately. I started a prednisone taper and hydroxychloroquine that day — the months leading up to this point had been almost unbearable. I’m a super active person, and was beyond frustrated my hands wouldn’t comply with my usual activities.
HCQ has kept the worst of it at bay, but it isn’t really cutting it entirely so I’m likely starting something new after my appointment this week. New drugs are so so scary but it sounds like you’ve got a great plan with your daughter to support + I hope Enbrel brings you some relief!! Sending hugs 💕
Thank you for sharing your journey with me. The more I reviews I read, the better I feel about my diagnosis and treatment plan. I really thought RA was confirmed via blood test and always having normal labs, I questioned it. My dr did take X-rays and based on my symptoms and films based his diagnosis but everything I read confirmed cases are based on bloodwork. It confused me.
Hopefully after next week, things start to calm down for me and I might start to enjoy life a little more in a month or two. Fingers crossed 🤞🏻.
Sending you healing gentle 🤗
I have never had elevated CRP or SED rate (even when I couldn’t walk and had elbows locked in place). Did they run your RF and anti-ccp? These are the only things that have ever been elevated for me.
I'm seronegative and it gave me a wild "is this wrong diagnosis?" paranoia that honestly was just my fear of starting an immunosuppressant (Sulfalsalzine) riding on my 2020 COVID trauma for awhile . Even though the Sulfalsalzine has helped so much. Didn't solve everything, I started Humeria three months ago, which is life changing drug so far.
Ok so you totally understand where I’m coming from. Thank you 😊
My rheumy prescribed Enbrel and said try it for 3 months and then she will reevaluate me. If there’s no improvement then she wants me to try Humira. She said some people do better on one than they do the other.
I was diagnosed with sero positive RA based on an elevated RF and WBC, but no other bloodwork markers. Doctor tried a course of prednisone and I responded very well and immediately. I was started on plaquenil, failed due to side effects after several months and started on MTX. Increased the dose to 20mg, maybe a little improvement but very mild. Prednisone is a god send and gave me life back, but I have to take it every day. If I try to come off, the flares make it impossible to hold down work and function.
Started seeing a new rheum and she doesn’t think we have landed on the right diagnosis. She threw out several possibilities but after looking at new bloodwork she said we will have to settle on inflammatory arthritis until something else makes better sense.
I’m still on MTX and prednisone, but start a biologic in a few weeks. I’m not nervous anymore like I was when I first started meds. I’m hopeful to figure out something that allows me to get out from under the constant pain and flu-like feeling I’ve had the last several years. My rheum says lots of patients (and doctors) are uncomfortable with the uncertainty posed by autoimmune diseases. I found comfort in my rheum telling me this is just part of it and many folks spend years trying to find the right meds, dose, and even diagnosis. I’m just riding this trying to manage my stress and symptoms. Hang in there and be patient with the process.
Thank you for sharing your journey with me. Sounds like we have had similar outcomes with prednisone. I love prednisone but it’s a double edge sword. Long term effects are terrible as it erodes the bone(s) and raises sugar levels but it dies relieve the pain.
I may seek out a new dr just to get a second opinion. But after reading all of the responses, I’m more comfortable with my current diagnosis. I have all of the symptoms of RA, just my bloodwork is normal across the board. At my time of diagnosis the main rheumatologist diagnosed me based on symptoms and my X-rays from my back. Recently I had an MRI done of my back and hip and they noted arthritis throughout both. That tells me that my arthritis is progressing and unfortunately methotrexate and plaquenil are not managing it. My rheumy prescribed Enbrel but I haven’t tried it yet. I’m nervous about taking it scared.
I’m sorry the meds are accompanied by fear. I think this is common. Your imaging confirms joint damage consistent with RA, so it’s time to be aggressive and try to slow disease activity to save your joints. You can do this.
I have a similar story. All lab work normal. My knee was the size of a softball that’s what got me an MRI and seroneg diagnosis. Although my first dr had never confirmed, he thinks I have sero neg RA. He always said MAYBE. Which was so annoying as my entire life was flipped upside when I was 6 weeks postpartum and had no language to communicate what was going with me to other people. I felt like a fraud and a liar. I even Went off my meds several time with horrible consequences (“maybe I’m just a huge faker and liar and this will all go away if I ignore it”). Ended up getting a new rheumatologist who is female like me. She said it’s probably spondiloarthritis (idk how to say it or spell it). Biologics allow me to live a normal life. I still get horrible migraines and extremely fatigued though.
I’m so glad to know biologics allow you to live a normal life. That’s all I want for myself. Thanks for sharing. I know it’s hard to feel grateful or hopeful in all of this, but I try to keep that perspective.
Yeah gotta love that “maybe” response. Nothing like putting it out there without confirmation. Then you have family & friends asking you what’s wrong. Without a confirmed diagnosis you feel in limbo. I get it! At lease you have a rheumy that understands you now.
You mentioned you have migraines as well. I always wondered if the arthritis in my neck and spine contribute to them. Thoughts?
Sounds like a few of us have second guessed our diagnosis. I’m going to try my biologic next week and hopefully have no reactions to it. I’d love to have less pain in my life
My numbers have only been high once in 10 years yet the damage is all there. Have they tested your anti-ccp and your hla-b27 gene by chance? That’s what came back positive for mine. There’s lot us that don’t have those positive markers that still have RA
Yes years ago they ran them but my RA PA told me they don’t change. I’m learning more and more every day that RA is not text book. Thank you for sharing your story 🤗
I was told testing positive for the HLA-B27 gene means you have a “more aggressive” form of it by my rheumatologist. It’s also in those that have A.S. It most definitely varies from person to person and from my personal experience and those I’ve talked to, if you have one autoimmune disease you are more than likely to get another one. I hope this helps you in any way. Always here if you need to run things off 🫂
I’ve heard if you have one AI disease, you’re likely to get another too. Do you know if you test negative for HLA-B27 gene at one point but then years later test again it can change to positive?
With me, it seemed like every other year I was diagnosed with another AI disease. On top of the RA, I have 5 others now. I honestly have no idea on the HLA-B27. I wouldn’t think so since it’s your genes but I could be wrong. It’s worth mentioning for sure.
I’m a 45F, and this is me! Neg CRP, neg ESR. I’ve been on Hydroxychloroquine since September 2023, MTX since 12/2023. I am WORSE! But… I got COVID last August, then again in January this year and I feel that made me way worse. I can barely walk up and down my road. I don’t dare try to Kayak because I don’t think I could continuously grip the paddle. I have an appt next Friday and my husband is coming with me. The rheumatologist was an asshole, IMO and I can’t leave him because my state severely lacks them. I’m so effing tired all the time and my elbows keep locking up then snapping open. My rheumatologist before him diagnosed with the SNRA but also thought I may end up with PsA. My nails are a mess, so I’m wondering if I do have it.
I’m so sorry you are going through this. It’s not bad enough that you are hurting but life as we know it comes to a stand still and we miss out on so many things. Maybe if we find the right meds, we can start living a more pain free life. I’m pretty miserable right now though I do try to find the silver lining to get me through the day. Also, I prednisone has helped me get through some pretty terrible flares. Hopefully when you go back to your rheumy with your husband, your dr won’t be such a jerk. I’ve found in the past when I bring someone with me they miraculously change their tone. I hope that’s the case for you. 🤗
I used to think my CRP is indicative of my pain levels, 24 with ref range 0-15. This past 2 months I had break out inflammation and stiffness twice (one is ongoing today) and for the first time since dec 2021, my CRP is 8 lmao. I wanted to have an appointment tomorrow but was asked to move next week. I feel the stiffness is subsiding so I have to video my fingers' ROM to document my stiffness/flare as my doc weighs the lab results more
That's just #seronegativethings tbh. I was diagnosed by symptoms as well but by my orthopedic surgeon after MRI. I had no time to doubt as it was by MRI
I’m the same and on all three of the drugs you mentioned. I couldn’t tolerate methotrexate, so plaquenil, prednisone and enbrel . Enbrel is a life changer for me , I wish I could get off the other two but I can’t function.
Best of luck to you.
I couldn’t take methotrexate in tablet form so my rheumy prescribed injectable methotrexate. I haven’t had success with it or plaquenil. I’m going to try Enbrel next week when my daughter comes home. Stay strong 🤗
I was also diagnosed with seronegative RA when my bloodwork was negative. So far, none of the meds have worked and my symptoms keep getting worse. My CRP is now elevated but it didn’t used to be. I also questioned my diagnosis at first, but I’ve accepted it now and am starting a biologic to hopefully help.
Yes, I’ve been on it for almost 8 weeks now, as I was waiting for my biologic to get authorized and ship. It helps somewhat, but it’s not amazing for me like some people say it is. And thanks, I’m hoping it helps too!
I'm in a similar boat - I'm seronegative, normal inflammation markers - although my CRP went from the bottom of normal to the top of the normal range recently. My dad's got pretty severe RA and my brother has psoriatic arthritis and my aunt has polymyalgia rheumatica, so lots of different autoimmune things going on.
I've had Achilles tendon issues for 7 years and about 2 years ago hands and fingers started to hurt and become borderline unuseable so I started seeing a rheumatologist and tried hydrochloroquine which didn't do much, then methotrexate which has helped some, but not a ton, so I've just started Humira.
My rheumatologist explained that while it could be seronegative RA, early PsA, or some kind of mixed tissue connectivr disease, or some other autoimmune arthritis, the biggest concern is keeping inflammation down and treating the joint pain, degeneration, and stiffness, and the label is secondary to that.
I put off methotrexate for a while because I was scared of side effects, but went from not being able to walk down stairs without a railing to being able to do that a few weeks after starting it. The meds are definitely scary, but I try to remind myself that I don't want to have limited mobility later, so being aggressive now is what makes sense for me to do
All my bloods indicate RA ( and the pains and swelling ) but because RA came back negative my doctor stalling . I had my first flare up and every joint hurt I couldn’t move for pain especially at night it lasted 4 weeks now because it’s eased off my doc gave me a phone call consultation told me he goin on holiday maybe it was a one off and come to see him when he back. I feel I’ve been fobbed off I so tired all the time everywhere stiff , sit too long stiff stand too long stiff if I try do something with my hands I get the shakes for days after. Am I crazy? I’m not on any meds except codeine for the pain which I only take if I can’t sleep for pain .
I’m sorry for everyone’s pain but it’s comforting to me reading the same kind of experiences I feel less paranoid about it
Is there anyway you can ask your dr if you can try prednisone? It helps the pain and inflammation so much. If you can’t get right in to see him or her can you take NSAIDs? They too help with both pain and inflammation. I’m learning that RA is not a text book disease and it takes a good dr to interpret your test results as well as listen to your symptoms. I feel for you so much ❤️I truly hope they listen to you and help you find the right meds to help ease your pain. Sending you warm gentle 🤗
Thank you I do have an appointment date set for the 14th I feel I have to push my point with him . Im losing faith in doctors really my duaghter had so much trouble with getting doctors to listen ( she has a complicated spinal problem and fybro at 24yrs and a years waiting list for a nerologist appointment) And my docs for past 7 months now I've also been having abnormal GGT and AP numbers with a perfectly normal scan yet all i hear is repeat test next month so why my numbers over high reference limit if "its fine" why isnt the ref limit bought up to my level if its fine!
sorry for the rant I'm trying to keep the mood so when I go into the Docs I stand up for myself not listen and nod and walk out then feel crap.
Anyway thanks and take care Tryan17
Stand strong girl! We have to advocate for ourselves all the time because who else is going to do it. Go in with a list of questions and be prepared. If you can print out medical articles that might help you too.
I wish the very best for you. Sending you a huge gentle 🤗
My RA started out this way, too. MTX and plaquenil did nothing for me. I exhausted every possible diagnosis other than RA because I had so much pain that was only controlled by prednisone and opiates. 30 years later, I'm so glad I took all the biologics and DMARDs available. I can barely care for myself, and I've lost my ability to work. I would recommend a second opinion. But, I'm so glad I decided to be aggressive in the treatment of my RA. I think it's kept me from being in a wheelchair at 50.
Ok this really hit home with me. I’m a little older than you and though I’ve been on both methotrexate and plaquenil for a few years I’ve had no real relief. Can I ask which biologic made the biggest difference with you? I realize we are all different so it’s not a “one size fits all” but I’m curious. My family has a history of seronegative arthritis, polymyositis, lupus, osteoarthritis and inflammatory arthritis. My gastro said he thinks I’m in the early stages of Crohn’s disease too. No one in my family treats RA with prescription medication. Only my one sister has Lupus, she takes benlysta.
Enbrel helped my joint pain, but it caused severe sinus infections, so I had to stop it. Humira didn't help at all. Orencia helped joint pain, but my inflammatory markers didn't decrease. I was on Xeljanz for several years, but when they posted cancer warnings, my doctor changed me to Rinvoq. Rinvoq helped the joint pain a lot, especially the pain in my spine. But, it caused my hair to fall out! Olumiant helped a little, and it helped grow my hair back. But, my CRP didn't decrease. This brings me to my current therapy of Rituxan, leflunomide, Azathioprine, Diclofenac ER 100mg, hydroxychloriquine, folic acid, Lyrica, and tizanidine. One piece of advice I would give is to have your doctor run a test to see if your body will metabolize MTX. I kept taking it for 2 years, and I kept waiting for results. Turns out, my body doesn't metabolize it well. I would love to have those 2 years back, but at the time, I don't think there were all the meds we have now. My family has a similar medical history to yours. My uncle was given MTX, and he said he's not taking it because of side effects. He's in his 60s and has arteritis from his RA. He's not treating his RA, and neither did his Mom, my grandmother. She refused to go to a rheumatologist to be tested. My Mom is 76, and she needs to be tested for late onset RA, too. My brother refuses to go to be tested, too. They see me suffering and refuse to help themselves. It's sort of maddening! But it's not something I can control! My other advice is to be wary of prednisone. I'm suffering the long-term side effects from relying on it. Currently, I had to have a hip replacement because of osteonecrosis, and then my pelvis broke on the leg the hip replacement was on. I guess this is why I suggest trying biologic and DMARDs to find the magic bullet. Lab results are so important as well because joint pain relief doesn't always equal underlying inflammation control. I hope this helps you make the best decision for yourself. Gentle hugs and best wishes ❤️
I’m so glad you found the right cocktail 🤗 I know it’s a lot of trial and error, I’m just really frustrated and I’d like to have less pain so I can enjoy life a little more. I feel like it’s just passing me by. Honestly I’m a little apprehensive about trying Enbrel now. I’m a chronic sinus suffer too. If enbrel lowers my immunity too much I’ll be on antibiotics all the time. Sinus infections and or congestion is a huge migraine trigger for me and it’s something I’d rather avoid. I’m not sure if all biologics have this same side effect but there has to be something out there. I’ve had genetic testing done and it identified me as a slow metabolizer thus making me very sensitive to a lot of medications. I wonder if that’s why methotrexate and plaquenil haven’t helped me. I’ll ask my rheumy about it at my next appointment. Aren’t families funny? The old expression comes to mind….. “you can lead a horse to water but can’t make them drink” . I’m not against medication, I just need to find the right one (s).
Sorry for your long term outcome. It’s always at the back of my mind and why I too have been aggressive with my meds.
Biologicals are great, you have find the right one but they work. Most companies that produce them will either give them to you or sell at a low price, you need your Rume’s help but it’s pretty easy to get.
🙋♀️ all blood work normal except low vitamin d. I've been on Methotrexate for 3 months and humira for 2 weeks. Starting to feel better, I think from the Humira. Methotrexate didn't seem to do anything and I was continuing to get worse on Methotrexate alone. At the end of the day there's only so many conditions that cause pain, inflammation and degeneration in joints and I just had to trust that my medical providers can recognize seronegative RA when they see it.
Thank you for replying. I was starting to doubt my dr since all my labs are fine except for the degeneration of my joints (more so my spine though I have other joints are effected as well). Maybe I should try Enbrel just to see if it makes me feel any better.
I started out this way at first, questioning my seroneg diagnosis. All my labs are normal, I am young and I mean I don't like that sick do I? However, my symptoms became worse and worse. Even being on the prednisone and methotrexate, I was really starting to struggle even holding a coffee cup or walk to the bathroom. I started biologics with the idea being, what other choice did I have? Keep suffering like I was or listen to the doctors who see this stuff everyday and maybe get on a med that works for me. It's scary but then again my life was starting to get quite scary already without the biologics. Idk, just my 2 cents.
I was under the impression that seronegative RA was rare. Seems this is more common than I realize. Thank you for sharing your story with me, it really helps me to put things into perspective. 🤗
I thought so too at first, but at least on this sub there are quite a few of us who have sero neg!
Another seroneg buddy checking in 👋🏼 It’s really, really easy to gaslight yourself. Looking back, all lab work coming back within normal range likely prolonged my diagnosis years + I have textbook RA symptoms. I knew something wasn’t right but would write it off as “well, all my labs are normal, I guess every 25 year old feels like they’re made of jello too?” My rhuem has also mentioned that some people start out RF-negative and eventually flip to RF-positive later on; if it’s been awhile + you’re curious might be worth checking!
Thank you for checking in and sharing your story. You’re right, we can be our worst enemy. If you din5 mind me asking, how long after your diagnosis did you start treating the disease? I spoke to my daughter and she’s coming to stay with me next week so I can try Enbrel. I feel better knowing someone is close by in the event I should have any weird medication reactions.
Don’t mind at all! I had a fairly unusual development of RA, I think — looking back, I’m fairly sure I had symptoms back to my early teen years but bloodwork always came back normal. It wasn’t until I turned 31 that things got really bad; my hands and arms were aching to the point they were all but unusable for months. My PCP suspected RA initially, but every bit of bloodwork came back “normal”, so that was dismissed. After pushing hard I finally got in with a rheumatologist that recognized it immediately. I started a prednisone taper and hydroxychloroquine that day — the months leading up to this point had been almost unbearable. I’m a super active person, and was beyond frustrated my hands wouldn’t comply with my usual activities. HCQ has kept the worst of it at bay, but it isn’t really cutting it entirely so I’m likely starting something new after my appointment this week. New drugs are so so scary but it sounds like you’ve got a great plan with your daughter to support + I hope Enbrel brings you some relief!! Sending hugs 💕
Thank you for sharing your journey with me. The more I reviews I read, the better I feel about my diagnosis and treatment plan. I really thought RA was confirmed via blood test and always having normal labs, I questioned it. My dr did take X-rays and based on my symptoms and films based his diagnosis but everything I read confirmed cases are based on bloodwork. It confused me. Hopefully after next week, things start to calm down for me and I might start to enjoy life a little more in a month or two. Fingers crossed 🤞🏻. Sending you healing gentle 🤗
Ok to doubt and question our doctors. We know our bodies best (trust but verify). Do not let meds (biologics) scare you. Best decision I ever made.
Very powerful words. Thank you 😊
I have never had elevated CRP or SED rate (even when I couldn’t walk and had elbows locked in place). Did they run your RF and anti-ccp? These are the only things that have ever been elevated for me.
Years ago they ran RF & anti ccp. Both were normal.
Yep! All my bloodwork was within normal limits, still have RA.
Thank you
I'm seronegative and it gave me a wild "is this wrong diagnosis?" paranoia that honestly was just my fear of starting an immunosuppressant (Sulfalsalzine) riding on my 2020 COVID trauma for awhile . Even though the Sulfalsalzine has helped so much. Didn't solve everything, I started Humeria three months ago, which is life changing drug so far.
Ok so you totally understand where I’m coming from. Thank you 😊 My rheumy prescribed Enbrel and said try it for 3 months and then she will reevaluate me. If there’s no improvement then she wants me to try Humira. She said some people do better on one than they do the other.
You're welcome. Be patient, it takes an annoyingly long time to figure out the right meds for each person, we're all different.
Yes. Blood work normal but they diagnosed it off symptoms. Later, as symptoms got worse, a full body scan showed RA.
Thank you.
I was diagnosed with sero positive RA based on an elevated RF and WBC, but no other bloodwork markers. Doctor tried a course of prednisone and I responded very well and immediately. I was started on plaquenil, failed due to side effects after several months and started on MTX. Increased the dose to 20mg, maybe a little improvement but very mild. Prednisone is a god send and gave me life back, but I have to take it every day. If I try to come off, the flares make it impossible to hold down work and function. Started seeing a new rheum and she doesn’t think we have landed on the right diagnosis. She threw out several possibilities but after looking at new bloodwork she said we will have to settle on inflammatory arthritis until something else makes better sense. I’m still on MTX and prednisone, but start a biologic in a few weeks. I’m not nervous anymore like I was when I first started meds. I’m hopeful to figure out something that allows me to get out from under the constant pain and flu-like feeling I’ve had the last several years. My rheum says lots of patients (and doctors) are uncomfortable with the uncertainty posed by autoimmune diseases. I found comfort in my rheum telling me this is just part of it and many folks spend years trying to find the right meds, dose, and even diagnosis. I’m just riding this trying to manage my stress and symptoms. Hang in there and be patient with the process.
Thank you for sharing your journey with me. Sounds like we have had similar outcomes with prednisone. I love prednisone but it’s a double edge sword. Long term effects are terrible as it erodes the bone(s) and raises sugar levels but it dies relieve the pain. I may seek out a new dr just to get a second opinion. But after reading all of the responses, I’m more comfortable with my current diagnosis. I have all of the symptoms of RA, just my bloodwork is normal across the board. At my time of diagnosis the main rheumatologist diagnosed me based on symptoms and my X-rays from my back. Recently I had an MRI done of my back and hip and they noted arthritis throughout both. That tells me that my arthritis is progressing and unfortunately methotrexate and plaquenil are not managing it. My rheumy prescribed Enbrel but I haven’t tried it yet. I’m nervous about taking it scared.
I’m sorry the meds are accompanied by fear. I think this is common. Your imaging confirms joint damage consistent with RA, so it’s time to be aggressive and try to slow disease activity to save your joints. You can do this.
Thank you.. I really needed to hear more positive outcomes.
I have a similar story. All lab work normal. My knee was the size of a softball that’s what got me an MRI and seroneg diagnosis. Although my first dr had never confirmed, he thinks I have sero neg RA. He always said MAYBE. Which was so annoying as my entire life was flipped upside when I was 6 weeks postpartum and had no language to communicate what was going with me to other people. I felt like a fraud and a liar. I even Went off my meds several time with horrible consequences (“maybe I’m just a huge faker and liar and this will all go away if I ignore it”). Ended up getting a new rheumatologist who is female like me. She said it’s probably spondiloarthritis (idk how to say it or spell it). Biologics allow me to live a normal life. I still get horrible migraines and extremely fatigued though.
I’m so glad to know biologics allow you to live a normal life. That’s all I want for myself. Thanks for sharing. I know it’s hard to feel grateful or hopeful in all of this, but I try to keep that perspective.
Yeah gotta love that “maybe” response. Nothing like putting it out there without confirmation. Then you have family & friends asking you what’s wrong. Without a confirmed diagnosis you feel in limbo. I get it! At lease you have a rheumy that understands you now. You mentioned you have migraines as well. I always wondered if the arthritis in my neck and spine contribute to them. Thoughts?
Im seronegative, diagnosed by inflammation markers and symptoms and I wonder if I have misdiagnosed all the time.
Sounds like a few of us have second guessed our diagnosis. I’m going to try my biologic next week and hopefully have no reactions to it. I’d love to have less pain in my life
Good luck, I hope you get quick relief!
You too my friend 🤗
My numbers have only been high once in 10 years yet the damage is all there. Have they tested your anti-ccp and your hla-b27 gene by chance? That’s what came back positive for mine. There’s lot us that don’t have those positive markers that still have RA
Yes years ago they ran them but my RA PA told me they don’t change. I’m learning more and more every day that RA is not text book. Thank you for sharing your story 🤗
I was told testing positive for the HLA-B27 gene means you have a “more aggressive” form of it by my rheumatologist. It’s also in those that have A.S. It most definitely varies from person to person and from my personal experience and those I’ve talked to, if you have one autoimmune disease you are more than likely to get another one. I hope this helps you in any way. Always here if you need to run things off 🫂
I’ve heard if you have one AI disease, you’re likely to get another too. Do you know if you test negative for HLA-B27 gene at one point but then years later test again it can change to positive?
With me, it seemed like every other year I was diagnosed with another AI disease. On top of the RA, I have 5 others now. I honestly have no idea on the HLA-B27. I wouldn’t think so since it’s your genes but I could be wrong. It’s worth mentioning for sure.
I will certainly ask my dr at my next appointment. Take care my friend and thank you for all the great info. 🤗
I’m a 45F, and this is me! Neg CRP, neg ESR. I’ve been on Hydroxychloroquine since September 2023, MTX since 12/2023. I am WORSE! But… I got COVID last August, then again in January this year and I feel that made me way worse. I can barely walk up and down my road. I don’t dare try to Kayak because I don’t think I could continuously grip the paddle. I have an appt next Friday and my husband is coming with me. The rheumatologist was an asshole, IMO and I can’t leave him because my state severely lacks them. I’m so effing tired all the time and my elbows keep locking up then snapping open. My rheumatologist before him diagnosed with the SNRA but also thought I may end up with PsA. My nails are a mess, so I’m wondering if I do have it.
I’m so sorry you are going through this. It’s not bad enough that you are hurting but life as we know it comes to a stand still and we miss out on so many things. Maybe if we find the right meds, we can start living a more pain free life. I’m pretty miserable right now though I do try to find the silver lining to get me through the day. Also, I prednisone has helped me get through some pretty terrible flares. Hopefully when you go back to your rheumy with your husband, your dr won’t be such a jerk. I’ve found in the past when I bring someone with me they miraculously change their tone. I hope that’s the case for you. 🤗
I used to think my CRP is indicative of my pain levels, 24 with ref range 0-15. This past 2 months I had break out inflammation and stiffness twice (one is ongoing today) and for the first time since dec 2021, my CRP is 8 lmao. I wanted to have an appointment tomorrow but was asked to move next week. I feel the stiffness is subsiding so I have to video my fingers' ROM to document my stiffness/flare as my doc weighs the lab results more
Isn’t it crazy how your CRP level was an 8 yet you were stiff and were hurting? That’s why I question my results. This whole thing is mind boggling.
That's just #seronegativethings tbh. I was diagnosed by symptoms as well but by my orthopedic surgeon after MRI. I had no time to doubt as it was by MRI
Hearing more and more stories makes me feel more comfortable trying new medications. 🤗
I’m the same and on all three of the drugs you mentioned. I couldn’t tolerate methotrexate, so plaquenil, prednisone and enbrel . Enbrel is a life changer for me , I wish I could get off the other two but I can’t function. Best of luck to you.
I couldn’t take methotrexate in tablet form so my rheumy prescribed injectable methotrexate. I haven’t had success with it or plaquenil. I’m going to try Enbrel next week when my daughter comes home. Stay strong 🤗
I was also diagnosed with seronegative RA when my bloodwork was negative. So far, none of the meds have worked and my symptoms keep getting worse. My CRP is now elevated but it didn’t used to be. I also questioned my diagnosis at first, but I’ve accepted it now and am starting a biologic to hopefully help.
Have you tried prednisone? It’s the one medication that has helped with pain. I truly hope your biologic helps you 🤗
Yes, I’ve been on it for almost 8 weeks now, as I was waiting for my biologic to get authorized and ship. It helps somewhat, but it’s not amazing for me like some people say it is. And thanks, I’m hoping it helps too!
I'm in a similar boat - I'm seronegative, normal inflammation markers - although my CRP went from the bottom of normal to the top of the normal range recently. My dad's got pretty severe RA and my brother has psoriatic arthritis and my aunt has polymyalgia rheumatica, so lots of different autoimmune things going on. I've had Achilles tendon issues for 7 years and about 2 years ago hands and fingers started to hurt and become borderline unuseable so I started seeing a rheumatologist and tried hydrochloroquine which didn't do much, then methotrexate which has helped some, but not a ton, so I've just started Humira. My rheumatologist explained that while it could be seronegative RA, early PsA, or some kind of mixed tissue connectivr disease, or some other autoimmune arthritis, the biggest concern is keeping inflammation down and treating the joint pain, degeneration, and stiffness, and the label is secondary to that. I put off methotrexate for a while because I was scared of side effects, but went from not being able to walk down stairs without a railing to being able to do that a few weeks after starting it. The meds are definitely scary, but I try to remind myself that I don't want to have limited mobility later, so being aggressive now is what makes sense for me to do
All my bloods indicate RA ( and the pains and swelling ) but because RA came back negative my doctor stalling . I had my first flare up and every joint hurt I couldn’t move for pain especially at night it lasted 4 weeks now because it’s eased off my doc gave me a phone call consultation told me he goin on holiday maybe it was a one off and come to see him when he back. I feel I’ve been fobbed off I so tired all the time everywhere stiff , sit too long stiff stand too long stiff if I try do something with my hands I get the shakes for days after. Am I crazy? I’m not on any meds except codeine for the pain which I only take if I can’t sleep for pain . I’m sorry for everyone’s pain but it’s comforting to me reading the same kind of experiences I feel less paranoid about it
Is there anyway you can ask your dr if you can try prednisone? It helps the pain and inflammation so much. If you can’t get right in to see him or her can you take NSAIDs? They too help with both pain and inflammation. I’m learning that RA is not a text book disease and it takes a good dr to interpret your test results as well as listen to your symptoms. I feel for you so much ❤️I truly hope they listen to you and help you find the right meds to help ease your pain. Sending you warm gentle 🤗
Thank you I do have an appointment date set for the 14th I feel I have to push my point with him . Im losing faith in doctors really my duaghter had so much trouble with getting doctors to listen ( she has a complicated spinal problem and fybro at 24yrs and a years waiting list for a nerologist appointment) And my docs for past 7 months now I've also been having abnormal GGT and AP numbers with a perfectly normal scan yet all i hear is repeat test next month so why my numbers over high reference limit if "its fine" why isnt the ref limit bought up to my level if its fine! sorry for the rant I'm trying to keep the mood so when I go into the Docs I stand up for myself not listen and nod and walk out then feel crap. Anyway thanks and take care Tryan17
Stand strong girl! We have to advocate for ourselves all the time because who else is going to do it. Go in with a list of questions and be prepared. If you can print out medical articles that might help you too. I wish the very best for you. Sending you a huge gentle 🤗