I haven't posted anything for a while, but I have just had my 6 monthly rheumy appointment and after being on Hydroxychloroquine since May it was no longer working. Since i had my flare back in August/September due to stress my joints haven't been the same, my stiffness came back along with pain and tenderness. Some joints have gotten worse especially knees and my neck, (which my be osteo as i have had a bad neck for years, or may now be affected by rheumatoid who knows)! Anyway my rheumy gave me another intramuscular steroid injection and i have now just started on Sulfasalazine along with my Hydroxychloroquine. Since i have not had any xrays done for about a year and my Hydroxychloroquine didn't work i expected to have more xrays done just to check to see if there is now any damage, i just wanted to know how often does everyone else have xrays done, and is it done more often if you are seropositve? Also my rheumy requested more bloods including ESR and CRP, i asked her if she was going to test my rheumatoid factor to see if it has changed but she said there was no need as once you are negative you will always be negative! I was quite surprised by her comment as I am sure i have heard of people starting off as seronegative especially in the early stages and then changed to seropositve months or years later. Has anyone one on here gone from seronegative RF to seropositve RF? Also she reminded me how mild mine is, ok my joints don't blow up like balloons and i'm not deformed, but i still suffer with pain, tenderness, stiffness and fatigue! And without doing more xrays and rheumatoid factor how would she know if it is getting worse or not?! Sorry for the rant and going on a bit, i suppose i shouldn't moan, at least she has given me more medication, so she must be taking me seriously in some ways. Does anyone else with seronegative rheumatoid arthritis have the same problems?
Ganit
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Ganit
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I don't think seronegative is always mild or non erosive - just less likely to be severe.
I'm always being disparaged by doctors - have got used to it but I'm under neurology too and if the new neuro tries to dispagage me too I'll flip! I think some of us have several things mildly as opposed to one thing badly. It must be worst of all to have lots of things badly of course but I think if these doctors had to cope with even mild RA they might show some more sympathy!
Then again I remind myself that they see people so much worse off than me all the time that I guess these consultants must get compassion fatigue?
My RF went from weak positive to negative which rheumy says is very unsual. I have no erosions to date but plenty of dead nerve fibres to keep me busy. X-Ray's aren't good for you so they try to keep them to minimum.
I totally agree with you about how different they would probably be if they had mild RA themselves! And you're right they probably compare the mild ones with the really bad ones, i shouldn't complain it's just you sometimes worry you don't get really bad through some doctors rigid views or ignorance. Thanks for your reply
I'm RF negative, and anti-CCP positive which my rheumy calls sero-negative...it seems there's a bit of variance! As ever! But I've never had either retested in 6 years, and not really bothered as to me the main use is for diagnosis.
Anyway, her rule of thumb is x-Rays no more that every 2 years, and preferably 3 unless she sees/feels a reason for more. She doesn't like to expose people to x-Rays unnecessarily and unless obvious signs of aggressive erosion then you wouldn't see huge change in under 2 years on x-Ray as a fairly crude thing.
She has a couple of times used ultrasound to see if there's active inflammation which is much less damaging. And yes, I do have spells of active inflammation still. But the only permanent damage was before I started on meds. Pain, stiffness etc doesn't have to mean damaged joints as can be caused merely by inflammation.
Thanks Helix for explaining some of that for me, I suppose rheumatogists don't always have time to explain things and sometimes reading too much on the internet can make you a bit of a hyperchondriac! But i have read that those that are anti ccp positive are more likely to have a more aggressive disease. I hope that isn't the case with you!
It was aggressive, but turns out that it's also obedient. So it has been tamed, thankfully, by the drugs. I do feel that this disease is so variable that the sero-neg or sero-positive distinction can be a red herring. You'll get to know your disease over time, and that's more useful.
Thanks for this post Ganit - has answered some questions I have wanted to ask. But I wonder If we have pain and stiffness in hands and feet and some joints look knobbly ( only word I can think of) does this mean there isn't necessarily damage being done!
I'm no expert but I think it's possible, depending on how you define damage of course! Damage to me means I can't use whatever it is - be it a kettle or a foot.
Pain and stiffness can be caused by inflammation. And knobblyness can be bone/cartilage changes that look weird, but don't neccessarily affect how that joint functions. So maybe not full on damage, but a bit bished about instead?
I'm sero-negative - no RF or blood inflammation markers at all. Yet I have some synovitis in my hands confirmed by ultrasound and some small erosions in my fingers, and confirmed systemic inflammation that responds positively to steroids.
Hi flow, you sound just like me and how mine was diagnosed, but as yet i do not have any erosions, well, not that i know of! You say it is systemic, do you mean it has affected some of your organs as well?
Hi Gannit ( love the name BTW ) I'm new to this site so nice to meet u all. I was diagnosed 2 and a half years ago but I have already experienced both the joy and the exasperation of my care team.MTX damaged my lungs so rhuemy put me sulfasalazine but since Nov last year hydroxychloroquine too. Not good! So GP prescribed oral press but still no joy so injection 2 weeks ago. Have managed 2 weeks at work out of the last 6. I've found that I have to ask for x-rays cos was so concerned about my knuckles being constantly swollen I was really worried about damage. I've found it a real uphill battle to get my rhuemy appt brought forward because I know these meds are not working and I know you have to give them time but all this trial and error is going to cost me my job. You shouldn't have to fight for your care surely?
I have a diagnosis of seropositive erosive RA. When first referred to rheumatology I had lots of X-rays done as a baseline. Subsequently I have only had X-rays when absolutely necessary if I am having a particular problem with a joint or area like chest. Over the past 20 years I have never had them as a matter of routine to monitor my disease so at times I have gone several years without any X-rays at all.
I live in Scotland, there my be different protocols in different areas. I don't think I would want to have too many X-rays especially if they can be avoided.
The seropositive markers didn't show up in tests for about 6 months or so from onset but regardless of this my treatment wouldn't have been any different.
Here they appear to routinely monitor/assess on visual observations of my joints and my report of how I am doing. Further investigations are only done if necessary.
I also meant to say that I took sulphasalazine for many years and it was an effective drug. It takes a bit of time to build up and be effective, hence your steroid jab to tide you over. It sounds like your rheumy is listening to you, hopefully sulphasalazine will be effective and get your disease under control. If not don't despair there are plenty more drugs and drug combinations. We are all different and it can take some time to find the most effective treatment for each individual.
Thanks Mall, so it sounds like you went from negative to positive, so i don't know why the rheumu said that, but as you said she must be listening to me and at least i'm being treated, so i suppose the seronegative and seropositive don't really matter. I just wish this steroid jab would hurry up and start working!
You could have been describing me! I've gone down the exact same path. Was just started on Sulfasalazine 1 month ago because the Hydroxy had stopped working. I've now been in the worst flare ever (was diagnosed with seronegative RA in June of 2014) and it's been going on since the middle of December. I don't swell or have redness...just horrid pain in all my joints. My rheumy looks at me strange sometimes, because I don't fit his paradigm, but like you he must take me seriously since he's added medication. I wish you luck with your journey, and gentle hugs!
It's so nice to hear that someone is just like me! I do get a bit of swelling on my hands, which the rheumy did see the first time she saw me, but it was typical that this time they were swollen in the morning, but of course went away by the time i saw her, typical! I also wish you luck & gentle hugs
I was diagnosed with Seronegative RA in 2009, my good RA Consultant left followed by another who left and another went the same way after that. Along the way three Nurse Specialists also departed, so there has been no help in between seeing a consultant as I used to do. The new one has only seen me once at the beginning of the year. She looked at my hands and said I was in remission (certainly does not feel like it though) and I have absolutely no medication now. I was supposed to see her in August but never got an appointment and feel totally let down. Meantime a hip replacement a year ago still hurts at times and I need a knee replacement on the other leg, so some days are really difficult. This new approach is bewildering to me as previously, since 2009 I have been on many types of medication, including various bio drips which I was allergic to and the last medication being Mycophenolate Tablets. She did say she thought the two or more years on those was a waste of time?? A few months after the hip replacement the lower left leg started to itch and swell and the right lower leg followed. Both are sore and painful. I had a Boplar at the Doctors in July and was promised important stockings to help with the swelling. The results of the Boplar ultrasound and the stockings never materialized despite me asking the GP , so am no better at all to add to the sore neck, hips, elbow shoulders etc. Anyone had this happen to them? Sorry to ramble on but nowhere to turn to is a horrible feeling. I s it that some consultants feel being seronegative is less important that seropositive perhaps?
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