Biologic eligibility when sero negative and little swelling?

[mary53]

Hi Everyone, Hoping that you are not in too much pain. I wanted to pick your collective brains. I have failed on Mthx and am now on Sulfalazine and Hydroxy. I am still in considerable pain but limited swelling and no inflammatory markers in my blood. A few weeks ago my DAS score was not high enough to be eligible for biologics. Has anyone here passed the test for eligibility for biologics with these type of symptoms...fingers crossed. Thanks for reading this Mary

[Hidden]

I was in the same boat as you describe several years ago. But my ESR and CRP were often very high and still are.

I think I'm correct in saying that,with RA, it's the swelling itself that causes the erosive damage, and non erosive pain is usually put down to Fibromyalgia.

In the end my diagnoses changed from seronegative RA to seronegative (i.e lip biopsy positive) primary Sjögren's with small fibre neuropathy and Raynayds. Fibromyalgia has never been mentioned because of my high inflammatory bloods.

Sjögren's often causes bilateral pain that is almost identical to RA - but is non erosive. The disease can attack other parts e.g blood, kidneys, liver, brain, nervous system and lungs as well as, most commonly, the orafaces and eyes. I'm now on my fifth DMARD called Mycophenolate - only really used for those with connective tissue diseases such as Vasculitis, Lupus, Scleroderma, and occasionally for Sjögren's too. They are usually wary of immunesuppression with Sjögren's because of the higher risk of Lymphoma.

Sjögren's and others can mimic RA very well minus the visible swelling (although I had some in my hands - hence my previous RA diagnosis). It has its own pain though that more often affects the nerves and tendons - but there aren't yet any targeted treatments so they usually only offer Fibromyalgia drugs such as Gabapentin and Pregabalin and I couldn't tolerate these.

Hope this helps.

[hawker955]

You could still receive biolocicals. I was sero-negative for a year, told it was reactive arthritis but as it did not clear the way reactive does, I was put on Humira. I ven had one doctor say later, You must have rheumatoid because you'reon Humira! I told him that I think diagnosis gives the treatment, not treatment giving the diagnosis! His was bizarre logic!

Anyway, biologics solved my problem rapidly, ser0-negativeor not.

Good luck.

[Hidden in reply to hawker955]

I don't think Mary53 mentioned seronegative or positive - just that there wasn't much swelling to be seen and her inflammatory markers normal. They wouldn't normally offer Biologics or anti-tnfs with no sign of swelling or systemic inflammation. Some people with seronegative RA have a lot of swelling and signs erosion. I suppose imaging is the most reliable way of finding out whether RA is erosive or not. If not then it may not be RA that is causing the pain.

[mary53 in reply to Hidden]

Hi I am sero negative...meant to mention that

[Fennella02 in reply to mary53]

How did you get your dx with none of the usual signs? The reason I ask is because of my dx amidst few clues.

[mary53 in reply to Fennella02]

Hi did initially have some swelling....main symptom for diagnosis was positive reaction to steroid injection and hand ultra sound

[Hidden]

It's been quite a few years since I started on biological drugs but being seronegative wasn't the issue, you did still have to meet the DAS criteria. If you have a look at the NICE guidelines, they still do say that you have to have severe disease activity which is a DAS score of great than 5.1.

Have you been referred for pain management? What pain medications are you taking?

[mary53 in reply to Hidden]

Hi on napraxon paracetamol and now codeine but not sure about the latter because it interfers with my ability to drive....

[Hidden in reply to mary53]

Do you find the codeine makes you drowsy, could you try it at night only? There are other non-opiate drugs like; gabapentin and pregablin which are used for pain. Also, have you tried non-medication options like; acupuncture?

[SandysOk in reply to mary53]

I am RA and PA pos + and I have been diagnosed for over 10 years . Now I see pain Management Gabapentin helps . I am also on high Pain Meds Due to Spinal Deterioration . It took a long while for me to adjust to them . Also I receive Steroid and B12 injections in my joints . It helped a lot .

Hope You find Some Relief

[Hidden]

Hi Mary,

I have psoriatic arthritis so the biologic criteria is a little different. However when I was assessed for biologics my rheumy counted swelling that I'd thought of as negligible and 6 weeks later at the second assessment the nurse practitioner found even more swollen joints. I get the impression that some rheumys will take steps to ensure that their clinical judgement prevails over guidelines when all else fails. I believe that the assessment for RA, as for PsA, counts 'tender / swollen' joints. The slash has always puzzled me - does it mean 'tender and swollen' or 'tender or swollen'? I still don't know but it might possibly provide some wriggle room if joints are tender on palpation although not visibly swollen.

Have you asked your rheumy about your chances of qualifying for biologics if you fail Sulfa and Hydroxy? Failing 2 or more DMARDs certainly ups your chances as opposed to just the one failure. Funny how 'failing' drugs can be a positive, but that's our upside down world I guess. The requirement for high inflammatory markers is a real bugbear. PsA patients so often have normal ESR & CRP and I gather from this site that the same can be true with RA even when it seems to be fairly active.

How well do your joints function? Pain is a tricky thing to measure, but not being able to do everyday things or experiencing significant difficulty doing things is always something to mention to your rheumatologist. DMARDs may reduce swelling & inflammatory markers but if you're still struggling with movement then it is hard to argue that the disease is under control.

I've tended to produce enough swelling to get me through the NICE hoops (another weird thing to be grateful for) but my rheumy has always taken pain seriously. However he did explain that pain can be quite bad even when the disease IS quite well-controlled. It may be that there will be other ways to limit the pain you're experiencing if you don't qualify for biologics. Exercise is one thing that can work well ... I always say this but I have to 'cos it is so true. The odd walk or whatever might not make any lasting difference but a regular exercise habit can actually prevent pain from starting in the first place.

But keep pushing for treatment that helps all round and if something looks even a little swollen, flag it up at appointments. Good luck.

[Ruffles13]

I have been on the same meds with no relief. Do you know what the DAS score is supposed to be before they consider biologics please.

[mary53]

May be 5? There is good stuff on the nras website