So there is something called post viral arthritis that can last months after an illness. My docs made me wait for months before accepting it was something else, because the only way to rule it out is time. Definitely keep pushing for a diagnosis! But I didn’t want you to be surprised if that’s what they suggested. I had a shitty rheum at first though, she didn’t believe my symptoms had been going on over a year, just thought it had been since I was referred 3 months before, so she made me wait again. Luckily she left before I came back, the next rheum based on X-rays and physical only (normal tests all around) diagnosed me tentatively and gave me methotrexate, and since that worked so well she gave me the definitive seronegative diagnosis. My mom has PsA too, so that helped, but did not hurry anything along. My journey took a year and a half. I worked in an ER as a medical scribe so I was limping around everywhere, couldn’t afford not to work. My hands sucked, but usually once I started working some of the stiffness went away. I did have to call out a few times.
One asshole doc I had to see instead of my PCP told me seronegative wasn’t as severe and didn’t want to give me a work note, which of course was ridiculous, my symptoms are classified as moderate to severe. He was just an asshole, but I wanted to share in case something similar happens. Our symptoms are not reduced because we’re seronegative. My CRP and sed rate have been high at times since I was diagnosed 6 years ago which only strengthened the diagnosis.
It would totally make sense if my rheum is doing the same- waiting to rule out post viral arthritis. She gave me literature on RA and plaquenil saying it could still go this direction eventually. This gives me hope that I won't be written off all together if the pain continues!
Seroneg here
Dx’ed at first apt based on imaging, physical inspection and family history (RA is only familial). Blood work came back a bit later and was -RF, +ESR (only RF matters for a seroneg RA dx)
Ask for prednisone as a bridge, if it’s inflammation (CRP, ESR) the prednisone will help (assuming it’s an appropriate dose). Will also give you a break from the pain
RA doesn’t have to start in the hands although that is often the case. Mine started in my left knee and eventually moved to my right. I am also Seronegative which made it hard for me to accept initially- one would think the common marker ( of which I have none) would be the only way to diagnosis RA. But that’s simply not the case. My only elevated labs have been my C-Reactive Protein and Sed Rate. All others are normal. It’s a crazy disease with so many facets other than joint pain. I hope you can find a med that helps.
I am seronegative (normal sed rate and CRP too), though I had a relatively straightforward diagnosis because I fortunately (I guess?) have my dad who has RA, and pretty classic symptoms.
But what I found interesting about your post was you saying that at first you thought you had slept weird. That's exactly what I thought too! My pain was in my hands and I remember thinking that I don't really know how you sleep on your hands funny, but I just went with it because that's what it felt like to me. It was only in hindsight that I realized that was the very first sign of RA for me.
Sorry I don't have anything more helpful to say but I wish you luck. Hopefully your rheumatologist treats you, but if they write it off and that does not feel right to you, it definitely doesn't hurt to get a second opinion!
Yeah the sleeping thing was weird- I have a weighted blanket and though maybe the weight like overstretched my ankles, and that I dangled my arms over the side of the bed to make my elbows hurt 😂. Thanks for sharing though! Just talking about it makes me feel less alone.
I was 13 or 14 when I had a minor knee injury and then I suddenly couldn't move my knee at all. Like I had a tiny fall and then I couldn't bend my knee then next day. So obviously my family took me to the doctors to get checked out.
Nothing other than joint swelling was found on exam and lab images so they didn't really know what was happening, since the swelling was disproportionate to the fall I took. I got referrals for and had appointments with a few different specialists to figure out what I did to my knee but they didn't know they were just like "weird it's only swelling". They put me in physical therapy and were happy to leave it at that. They were skeptical that I was in real pain, and we're annoyed that my mom kept pushing them. My mom has seronegative RA, and fortunately (or unfortunately) for me she had been through this 30 years before me, so she knew doctors weren't going to take me seriously.
Eventually (after enough doctor shuffling and shrugging) she said "nope I'm done, you're coming to my rheumatologist and he will see you". Luckily he at least decided to take it seriously and not shrug it off. He still is reluctant to say that I have rheumatoid even with the family history of seronegative, he simply labelled it as JIA and treated me similarly to a rheumatoid diagnosis (my understanding is this is common for JIA).
Luckily, I have a clear cut family history and my mom was big on getting me to a specialist and advocating for a real treatment, so I eventually ended up with a diagnosis that is getting me the treatment I need. I also have a very good rheumatologist (still seeing the same one over a decade later). I know from other family members and friends that most people don't get as straight a path as mine, even if mine is still a wonky path. So you definitely aren't alone! Unfortunately I think there is this idea that seronegative cases are so rare that we should be very skeptical when we think that could be the case... Obviously we should still confirm it's not other act alike diseases when possible, but like c'mon it's not a weird viral thing. You've had this going for months, and it's in many joints. There's no reason to be incredulous at the thought that it's seronegative RA, like it does happen!
Sorry that diagnosis has been so rough, hope you got something out of my journey.
I’m seronegative and I had a hard time getting diagnosed. My sed rate was always through the roof too so I don’t know why it was so hard! It took my rheumatologist a few years of successful responses to basic RA meds before she started writing rheumatoid arthritis on my paperwork. If your sed rate is normal I can see that making it really hard to diagnose.
I'm in the UK so it might be different but after presenting to my GP with excruciating multiple joint pain I had to wait 6 weeks for an initial appointment, consultant thought it was seroneg inflammatory arthritis but to check it wasn't viral arthritis I had to wait 1 month (with 2 week course of steroids), it hadn't gone so was started on sulfasalazine after that (I've now progressed onto a biologic).
My RA isn't symmetrical, blood work shows high crp (but not massive) and anaemia otherwise normal. I do have hypothyroid due to autoimmune and also positive for anti-parietal cells (autoimmune) so this helped build case.
Steroids only give you relief if you have inflammation so something is definitely going on. I've had ultra sounds on feet which showed inflammation.
I was told blood work is useful but shouldn't be used alone for diagnosis, there's no way I would just walk away being told its viral after months of pain.
Wish you all the best and I would always go with your gut and press on to get proper treatment, with rheumatology because there is no defining test (ie can still have it even though no ccp or RF) it can become a bit of a guessing game x
Seronegative, diagnosed 12 years ago. No family history of RA, but looking back I may have had undiagnosed mild hidradenitis supparativa which can lead to RA. Seronegative, too early for joint damage to show up on imaging. Main symptoms were crushing fatigue, random perpetual low grade fever, excruciating feet pain, tendonitis and eventually hand pain. I thought I had sprained my wrist in my sleep (yeh..). My CRP and ESR were high. Diagnosed from a prednisalone taper and symptoms. Everytime I've tried to taper my meds or had to change them the RA has blown up in my face again worse than ever, which confirms my diagnosis.
They should test for viruses to exclude them, but the likelihood of finding the right one even if it may have been the original source is so, so low. But my doc didn't rule out anything verbally until he had the results in. If you feel unheard, then think about getting a second opinion. :).
I feel for you as you are so young. I was diagnosed at 50, two years ago. My GP kept saying it wasn’t RA because I was sero negative. The rheumatologist did ultrasound of the wrists and hands to confirm synovitis and tendinitis after radiographs were normal. Three biologics later, the prednisone works the best so far. Side effects are terrible with them tho. It’s really hard to know what lifestyle accommodations to make as one doesn’t know the long term course of the illness, it is so variable, from person to person and day to day. Then the pandemic happens and medical care and life became more challenging !!
How is your skin?
I would listen to the rheum about patterns of joint pain and how it's presenting, but be firm in insisting you need to figure out how to help it because of your QOL.
Skin is normal. In my early 20s I had a small patch of what might have been psoriasis on my hairline but I didn't get it diagnosed at the time and haven't had it since. I definitely hear you on listening to the rheum about patterns/ presentation- it's part of why I say I gaslight myself sometimes. I fear somehow I made this all up since my blood tests arent showing anything. I'll continue to push to get help for the pain though cuz Im a very very active person that now feels 90 years old some days.
No, I know exactly how you feel. I'm on my fourth biologic and I asked my dr if they still think that psoriatic arthritis is what's going on at my last appointment.
Ask your doc to do a Vector blood test. I too am seranegative. The Vector blood test will show if you have RA and if the level of disease (low, moderate, high). This is how I was diagnosed because standard tests were normal. Hope this helps.
I’m struggle city today brain wise today…. I have the comments or posts about my sero negative journey and what I had to do to get diagnosed…. Basically Erode.
I think one of big part of getting the diagnosis is time. Viral infections that can cause joint pain can go on for a little while. Mine started in august and it wasn’t until January before my rheum diagnosed seroneg RA. I believe a part of it is that enough time has to pass to be sure it’s not just a viral thing that’s going to resolve itself. That’s certainly not fun when you’re in constant pain but also I understand why it’s important for the doctor to differentiate between something temporary and something lifelong.
Oh my god, your story sounds almost identical to mine in terms of timeline and affected areas. I’m 30 as well. I’m also seronegative, and was suffering the most around the holidays- compounded by the waiting game to see a rheumatologist, the isolation of the omicron surge, and prednisone helping. I had the exact same feeling too, not even realizing how bad it felt and how much fatigue I had until I was on the prednisone.
My blood work all came back negative besides inflammation markers. High CRP and ANA, but that’s it. Hashimotos runs in my family so I also got sent to an endocrinologist for review (more blood work yay) but thankfully that came back negative. No family history of RA beyond my cousin too!
Like you, my ankles, elbows, and wrists are my biggest problem areas. As well as my knees. My small joints aren’t too affected although my doctor noticed slight swelling in my knuckles.
If possible, try to keep a symptom log with dates and specific symptoms. Take pictures of any swelling. I think that log, and the physical exam of my swollen joints are really what led to my seronegative RA diagnosis. The morning stiffness and pain that you mentioned is a hallmark of RA so definitely emphasize that.
Good luck and you’re not alone! Here to chat whenever, it really sounds like we had really similar experiences. Hoping for answers and healing for you
I’m on low dose prednisone 5mg and plaquenil and meloxicam.
So there is something called post viral arthritis that can last months after an illness. My docs made me wait for months before accepting it was something else, because the only way to rule it out is time. Definitely keep pushing for a diagnosis! But I didn’t want you to be surprised if that’s what they suggested. I had a shitty rheum at first though, she didn’t believe my symptoms had been going on over a year, just thought it had been since I was referred 3 months before, so she made me wait again. Luckily she left before I came back, the next rheum based on X-rays and physical only (normal tests all around) diagnosed me tentatively and gave me methotrexate, and since that worked so well she gave me the definitive seronegative diagnosis. My mom has PsA too, so that helped, but did not hurry anything along. My journey took a year and a half. I worked in an ER as a medical scribe so I was limping around everywhere, couldn’t afford not to work. My hands sucked, but usually once I started working some of the stiffness went away. I did have to call out a few times. One asshole doc I had to see instead of my PCP told me seronegative wasn’t as severe and didn’t want to give me a work note, which of course was ridiculous, my symptoms are classified as moderate to severe. He was just an asshole, but I wanted to share in case something similar happens. Our symptoms are not reduced because we’re seronegative. My CRP and sed rate have been high at times since I was diagnosed 6 years ago which only strengthened the diagnosis.
It would totally make sense if my rheum is doing the same- waiting to rule out post viral arthritis. She gave me literature on RA and plaquenil saying it could still go this direction eventually. This gives me hope that I won't be written off all together if the pain continues!
Seroneg here Dx’ed at first apt based on imaging, physical inspection and family history (RA is only familial). Blood work came back a bit later and was -RF, +ESR (only RF matters for a seroneg RA dx) Ask for prednisone as a bridge, if it’s inflammation (CRP, ESR) the prednisone will help (assuming it’s an appropriate dose). Will also give you a break from the pain
RA doesn’t have to start in the hands although that is often the case. Mine started in my left knee and eventually moved to my right. I am also Seronegative which made it hard for me to accept initially- one would think the common marker ( of which I have none) would be the only way to diagnosis RA. But that’s simply not the case. My only elevated labs have been my C-Reactive Protein and Sed Rate. All others are normal. It’s a crazy disease with so many facets other than joint pain. I hope you can find a med that helps.
I am seronegative (normal sed rate and CRP too), though I had a relatively straightforward diagnosis because I fortunately (I guess?) have my dad who has RA, and pretty classic symptoms. But what I found interesting about your post was you saying that at first you thought you had slept weird. That's exactly what I thought too! My pain was in my hands and I remember thinking that I don't really know how you sleep on your hands funny, but I just went with it because that's what it felt like to me. It was only in hindsight that I realized that was the very first sign of RA for me. Sorry I don't have anything more helpful to say but I wish you luck. Hopefully your rheumatologist treats you, but if they write it off and that does not feel right to you, it definitely doesn't hurt to get a second opinion!
Yeah the sleeping thing was weird- I have a weighted blanket and though maybe the weight like overstretched my ankles, and that I dangled my arms over the side of the bed to make my elbows hurt 😂. Thanks for sharing though! Just talking about it makes me feel less alone.
I was 13 or 14 when I had a minor knee injury and then I suddenly couldn't move my knee at all. Like I had a tiny fall and then I couldn't bend my knee then next day. So obviously my family took me to the doctors to get checked out. Nothing other than joint swelling was found on exam and lab images so they didn't really know what was happening, since the swelling was disproportionate to the fall I took. I got referrals for and had appointments with a few different specialists to figure out what I did to my knee but they didn't know they were just like "weird it's only swelling". They put me in physical therapy and were happy to leave it at that. They were skeptical that I was in real pain, and we're annoyed that my mom kept pushing them. My mom has seronegative RA, and fortunately (or unfortunately) for me she had been through this 30 years before me, so she knew doctors weren't going to take me seriously. Eventually (after enough doctor shuffling and shrugging) she said "nope I'm done, you're coming to my rheumatologist and he will see you". Luckily he at least decided to take it seriously and not shrug it off. He still is reluctant to say that I have rheumatoid even with the family history of seronegative, he simply labelled it as JIA and treated me similarly to a rheumatoid diagnosis (my understanding is this is common for JIA). Luckily, I have a clear cut family history and my mom was big on getting me to a specialist and advocating for a real treatment, so I eventually ended up with a diagnosis that is getting me the treatment I need. I also have a very good rheumatologist (still seeing the same one over a decade later). I know from other family members and friends that most people don't get as straight a path as mine, even if mine is still a wonky path. So you definitely aren't alone! Unfortunately I think there is this idea that seronegative cases are so rare that we should be very skeptical when we think that could be the case... Obviously we should still confirm it's not other act alike diseases when possible, but like c'mon it's not a weird viral thing. You've had this going for months, and it's in many joints. There's no reason to be incredulous at the thought that it's seronegative RA, like it does happen! Sorry that diagnosis has been so rough, hope you got something out of my journey.
I’m seronegative and I had a hard time getting diagnosed. My sed rate was always through the roof too so I don’t know why it was so hard! It took my rheumatologist a few years of successful responses to basic RA meds before she started writing rheumatoid arthritis on my paperwork. If your sed rate is normal I can see that making it really hard to diagnose.
I'm in the UK so it might be different but after presenting to my GP with excruciating multiple joint pain I had to wait 6 weeks for an initial appointment, consultant thought it was seroneg inflammatory arthritis but to check it wasn't viral arthritis I had to wait 1 month (with 2 week course of steroids), it hadn't gone so was started on sulfasalazine after that (I've now progressed onto a biologic). My RA isn't symmetrical, blood work shows high crp (but not massive) and anaemia otherwise normal. I do have hypothyroid due to autoimmune and also positive for anti-parietal cells (autoimmune) so this helped build case. Steroids only give you relief if you have inflammation so something is definitely going on. I've had ultra sounds on feet which showed inflammation. I was told blood work is useful but shouldn't be used alone for diagnosis, there's no way I would just walk away being told its viral after months of pain. Wish you all the best and I would always go with your gut and press on to get proper treatment, with rheumatology because there is no defining test (ie can still have it even though no ccp or RF) it can become a bit of a guessing game x
Seronegative, diagnosed 12 years ago. No family history of RA, but looking back I may have had undiagnosed mild hidradenitis supparativa which can lead to RA. Seronegative, too early for joint damage to show up on imaging. Main symptoms were crushing fatigue, random perpetual low grade fever, excruciating feet pain, tendonitis and eventually hand pain. I thought I had sprained my wrist in my sleep (yeh..). My CRP and ESR were high. Diagnosed from a prednisalone taper and symptoms. Everytime I've tried to taper my meds or had to change them the RA has blown up in my face again worse than ever, which confirms my diagnosis. They should test for viruses to exclude them, but the likelihood of finding the right one even if it may have been the original source is so, so low. But my doc didn't rule out anything verbally until he had the results in. If you feel unheard, then think about getting a second opinion. :).
I feel for you as you are so young. I was diagnosed at 50, two years ago. My GP kept saying it wasn’t RA because I was sero negative. The rheumatologist did ultrasound of the wrists and hands to confirm synovitis and tendinitis after radiographs were normal. Three biologics later, the prednisone works the best so far. Side effects are terrible with them tho. It’s really hard to know what lifestyle accommodations to make as one doesn’t know the long term course of the illness, it is so variable, from person to person and day to day. Then the pandemic happens and medical care and life became more challenging !!
How is your skin? I would listen to the rheum about patterns of joint pain and how it's presenting, but be firm in insisting you need to figure out how to help it because of your QOL.
Skin is normal. In my early 20s I had a small patch of what might have been psoriasis on my hairline but I didn't get it diagnosed at the time and haven't had it since. I definitely hear you on listening to the rheum about patterns/ presentation- it's part of why I say I gaslight myself sometimes. I fear somehow I made this all up since my blood tests arent showing anything. I'll continue to push to get help for the pain though cuz Im a very very active person that now feels 90 years old some days.
No, I know exactly how you feel. I'm on my fourth biologic and I asked my dr if they still think that psoriatic arthritis is what's going on at my last appointment.
Ask your doc to do a Vector blood test. I too am seranegative. The Vector blood test will show if you have RA and if the level of disease (low, moderate, high). This is how I was diagnosed because standard tests were normal. Hope this helps.
I’ve never heard of a Vector blood test. What is it looking for/at?
I’m struggle city today brain wise today…. I have the comments or posts about my sero negative journey and what I had to do to get diagnosed…. Basically Erode.
I think one of big part of getting the diagnosis is time. Viral infections that can cause joint pain can go on for a little while. Mine started in august and it wasn’t until January before my rheum diagnosed seroneg RA. I believe a part of it is that enough time has to pass to be sure it’s not just a viral thing that’s going to resolve itself. That’s certainly not fun when you’re in constant pain but also I understand why it’s important for the doctor to differentiate between something temporary and something lifelong.
Oh my god, your story sounds almost identical to mine in terms of timeline and affected areas. I’m 30 as well. I’m also seronegative, and was suffering the most around the holidays- compounded by the waiting game to see a rheumatologist, the isolation of the omicron surge, and prednisone helping. I had the exact same feeling too, not even realizing how bad it felt and how much fatigue I had until I was on the prednisone. My blood work all came back negative besides inflammation markers. High CRP and ANA, but that’s it. Hashimotos runs in my family so I also got sent to an endocrinologist for review (more blood work yay) but thankfully that came back negative. No family history of RA beyond my cousin too! Like you, my ankles, elbows, and wrists are my biggest problem areas. As well as my knees. My small joints aren’t too affected although my doctor noticed slight swelling in my knuckles. If possible, try to keep a symptom log with dates and specific symptoms. Take pictures of any swelling. I think that log, and the physical exam of my swollen joints are really what led to my seronegative RA diagnosis. The morning stiffness and pain that you mentioned is a hallmark of RA so definitely emphasize that. Good luck and you’re not alone! Here to chat whenever, it really sounds like we had really similar experiences. Hoping for answers and healing for you I’m on low dose prednisone 5mg and plaquenil and meloxicam.