I’m perplexed and curious! My blood work never shows anything untoward, no positive RA factor, anti CCP etc. , hence sero- egative. My affected joints are only on my right side (except for my left elbow). I do have tender and swollen inner forearms, right worse than left (doesn’t elicit any comment from my Rheumy). The knuckle swelling, redness and heat can wax and wain during the course of a day, ultrasound scan of right hand shows inflammation and osteoarthritis but I never experience stiffness in any joint (only in my spine…but that’s from major bio-mechanical reasons)….pain yes, but never stiffness. So. certainly no symmetrical symptoms, no stiffness…..yet my clinical diagnosis is inflammatory RA for which I’m prescribed MTX 22.5 mgs subcut (soon to be 25mg as at present it’s deemed the disease is not fully under control). Any thoughts, anyone with same/similar presentation?
Atypical sero-negative RA presentation…anyone else? - NRAS
Atypical sero-negative RA presentation…anyone else?
I'm seronegative too, my bloods are always normal other than a low white cell count. Most of my symptoms are on the right side except for my left hand and ankle. I have extensive OA and severe lumbar and cervical issues too. My previous rheumatologist said I had RA, but my new one has changed my diagnosis back to inflammatory arthritis, he says that he is quite confident that I don't have RA.
It is all a minefield and quite baffling, like you my condition is not well controlled despite taking a JAK inhibitor, leflunomide and daily oral prednisolone.
Thanks for your reply Mmr….yes, baffling is the word! I see my Rheumy f2f in a week’s time so maybe she will come up with something different! Best wishes.
🤷♀️
I am positive for anti cccp but otherwise my inflammatory markers are always low and my rheumatologist mentions this from time to time on my notes to explain the treatment to other doctors. I always remember a few years ago I stoically said I know other people are worse off than me (I had been reading the posts on the lupus forum here) and she looked at me with a horrified expression and told me firmly 'You have severe rheumatoid arthritis.' I was in a lot of pain by then but hadn't realised how fast this was damaging my joints.
She had to do ultrasound scans and extra DAS scores to justify me getting the extra funding needed for biologics.
Like you the pain can come and go randomly during a day.
I read recently that they have come up with a new blood test for cytokines that they are using in research settings. I suspect if this gets rolled out general rheumatology patients people like us will finally have a test that accurately represents our inflammation levels.
Thanks for your reply, JenniferW. Such a complex subject. Do you feel you’re medicated well enough now or are you still in pain?
Yes I am well medicated now, on hydroxychloroquine 200mg a day, methotrexate 20mg a week and abatacept, a biologic. The pain is only occasional now if I overdo it plus occasionally randomly in my feet, for no particular reason, it doesn't correlate with general achiness in a flare up or physical activity.
I was on 25mg of methotrexate, then once the abatacept had got it under control the rheumatologist talked to me about reducing my other meds. I think she was thinking of the hydroxy, but I wanted to try reducing the methotrexate because of all the side effects. We tried going down to 15 mg, but that was too low a dose and the symptoms started returning, so I am now staying on 20mg.
I’m s-negative too re diagnosed as having nflammatory arthritis due to tendon and muscle pain and stiffness.
My hand was like yours on diagnosis. Again like you only resented in one hand with swelling but no stiffness and first 2 years did well on MtX but my swelling came and went during the day still does . Then all hell broke loose and spent the next 5 years on and off new meds . Feet are a mess Achilles always flaring and had tearing and calcification steroid injected into tendon has now failed . Many joints now have inflammation and I have fibro.
I’m sorry to hear this J1707. I sincerely hope you can be better medicated to help your Achilles tendon, joints and fibromyalgia to calm down. What is being suggested for you as a way forward?
I’m hoping to start a new drug called Rinvoq in the next few weeks just waiting for appt then I’ll see what they say about Achilles. Hopefully they can get you sorted but your hand looks like your disease is active
Oh fingers crossed that Rinvoq has your name on it! X
I am the same darling my bloods never show anything untoward. xxxx
Thanks sylvi. How are you and Bob doing?
We are plodding along. I am waiting for heart surgery and it is taking its toll on me to be honest. Bob is having trouble with his sleeping at the moment. Thank you for asking. xxxx
I’m sorry it’s so tough for you both at the moment….you’re in our thoughts and prayers. I know you’ll be taking it easy now, but I’m hoping you have some distraction and lighter moments to brighten your days. X
Aww thank you darling that is so sweet of you to say that. I am finding it very hard at the moment as i just can't do anything at the moment.xxxx
Here’s my cautionary tale about seronegative RA just in case it’s useful to you or others here:
It’s taken me 12 years to get properly diagnosed due to negative antibodies for all that I was tested for - which in immunology terms - wasn’t enough I later discovered. I was diagnosed with RA in 2011 due to high inflammatory markers and swollen knuckles and put on combined therapy, methotrexate and Hydroxichloraquine. My hands looked and often still look like yours.
My feet were also painful but weren’t X-rayed ever so, rediagnosed years later with primary Sjögren’s (also seronegative) I was finally given an ultrsound in one foot finally 3 years ago. This showed two large Morton’s neuromas - one located very unusually - and lots of scattered calcinosis cuti. By this time I had developed bad Raynaud’s as well and a very rare antibody specific to scleroderma. No one had tested me for Lupus, Sjögren’s, Vasculitis or scleroderma when I first presented with inflammatory arthritis in 2011. Nor did anyone notice my dry eyes and mouth or Raynaud’s until my GP finally diagnosed and sent me for a second opinion and both were confirmed. All anyone thought about was anti CCP and RA/ IA for me - later ANA and anti Ro and dsDNA. None were positive and none were relevant to me as it turned out.
Even last year I had to travel to London’s Royal Free and see one of the world’s few scleroderma experts privately to get “unequivocally” diagnosed with seropositive systemic sclerosis and also hypermobile spectrum disorder/ EDS. My OA is confirmed in hands but most severe in my spine along with scoliosis of EDS. I’m on Mycophenolate for scleroderma and monthly infusions for my Raynaud’s.
Scleroderma/ systemic sclerosis is rare, and has many different antibodies compared to RA. It also has a much worse outlook in terms of mortality than any other rheumatic autoimmune. So rheumatologists often avoid diagnosing it in hope it’s just RA, Lupus or Sjögren’s or they often prefer to misdiagnose as Fibro or dismiss as all OA. Also scleroderma can evolve more slowly and hands appear swollen very like RA only it’s fluid retention with tendons and ligaments hardening rather than joints eroding . This means many wait a long time to get correctly diagnosed and treated. I don’t blame my first rheumatologist for misdiagnosing and treating me with RA because the treatments helped and are fairly ubiquitous anyway at the start ie methotrexate, Hydroxichloraquine etc. But as it evolves and puts heart, lungs, kidneys and GI at such high risk of failing, it’s good to at least be aware of systemic sclerosis and also types of myositis - especially those here who are unsure about their diagnosis - as I was all those years ago.
Thankyou Old Ted: indeed a cautionary tale! I’m so sorry you’ve had such a painful and difficult journey to discover a diagnosis that has enabled you to have the correct medication…you’re obviously very tenacious! How are you now?
Thanks CallMeSunny. Obviously I think/ hope the evolution of my connective tissue disease from seronegative RA to seropositive systemic sclerosis is very much the exception to the rule and that most here will not experience anything remotely similar.
And yes I’ve become extremely tenacious out of necessity and because I think I suspected that I had scleroderma many years ago when Raynauds suddenly started with RA - but the diagnostic criteria are very rigid. The skin tightening and thickening of excessive collagen that most will experience, I never really have had. At least I think I felt it prior to immunesuppressant treatment but it didn’t show to my doctors at the time of appointments.
The professor at Royal Free hospital last year said this was due to me having opposite extreme of too little collagen as he observes in very hypermoble patients like me. He said that this hereditary anomaly of EDS has masked the classic Sclerodactyl in hands and face but he could still see the red spots everywhere on face, neck, hands and feet. He thinks I likely did have some RA at the start and I do have Sjögren’s long diagnosed by lip biopsy. But these are seronegative and have broadly burnt out for now with the years of DMARD treatments.
Whereas my systemic sclerosis is early stage still and my antibody points to a more severe systemic disease subtype so he’s very glad my lovely rheumatologist has taken a belt and braces approach in treating regardless of the label she gave it (Overlap CTD). So he really only added the correct labels at last but it’s amazing how validating this was and is after so long. And my rheumatologist is relieved too even though I’m her only scleroderma patient. I could have gone back to the specialist clinic but my treatments wouldn’t change and she says she is happy to keep me and contact the eminent professor directly herself when necessary. I didn’t like her scleroderma colleagues much.
These local rheumatologists told me that, as a seronegative patient, my Sjögren’s and RA would only ever be mild and more chronic pain and illness than anything requiring further immunesuppressing treatments. They almost discharged me back to GPs.
By the time I saw the vascular medicine dr again in 2021 this rare scleroderma antibody had shown up highly positive repeatedly and I’d lost 3 stone unintentionally from confirmed severe gastroparesis.
He pinched my skin on backs of hands and half heartedly checked for hypermobile joints when I suggested EDS might mask the skin tightening in my stretchy hands. He said and wrote that I did not have scleroderna and did not have EDS - just Sjögren’s and arthritis?! Luckily my dermatologist felt this was wrong and referred me to a lupus expert in sane hospital for second opinion.
2 years and 3 more stone weightloss later, the world scleroderma expert rheumatologist diagnosed both unequivocally 🤷🏼♀️🙄🤦🏼♀️. Bad as the prognosis is I’m actually relieved because I’d developed imposter syndrome for many years but am now starting to accept and move on with help and support from my family and my doctors x
What a journey you’ve had OldTed60…I salute your fortitude and totally understand the relief you feel: at least you know definitely what you have to deal with and can face it head on, as you obviously are doing, thankfully with wonderfully supportive family and friends. I wish you the very best of strength to keep going!
Aww that’s so kind of you. I’m doing pretty well mostly apart from my awful scleroderma gut problems and some related malabsorption. So far my heart and lungs are unaffected which I’m very grateful for. Anyway I feel I’ve hijacked your post a bit with my long cautionary tale but I always feel for seronegative people and just wanted to say how similar my hands look to yours too. I’m glad you’re being treated already but I think it’s worth knowing that RA isn’t the only autoimmune disease which can cause puffy knuckles and fingers - just in case others here find my story strikes a chord X
Trying to show you my hands when “normal” and during flares but it won’t let me attach!
A truly Cruel disease.
Hi I am also seronegative and my hands look exactly like yours. My white cell count is also very low. 2018 it started in my right hand but has now progressed to my other hand and knees. It’s very strange!🤣
Thanks for replying Spin1959. I’m beginning to suspect some inflammation in my left hand too….my knees are ridiculously puffy (certainly wouldn’t win a pretty knees competition) but I think it’s more likely to be lymphoedema. I’ve had different symptoms all my life, tested frequently for auto inflammatory disease but because absolutely nothing showed in my blood work, it wasn’t until my right hand exhibited recognisable clinical symptoms that I was officially diagnosed in 2019. Are you prone to infections because your white cell counts are so low?
My blood work has only showed RF once in 30 years!! All my symptoms are mainly in the right with a degenerative spine.I've been zero neg /inflammatory arthritis most of the time but I'm not convinced that they've got it right.
I feel exactly the same, Spanelmad!….and I have a Spaniel 🐶😂👏
That's a coincidence. I was at the hospital this morning for a routine appointment with the Rheumatology nurse. I've got Seronegative RA as well.
She actually told me that with Seronegative RA the CRP and ESA blood tests do not properly show the level of inflammation in your body.
I was well pleased with this as I'd been telling the Consultants for the last 30 years exactly the same thing and none of them agreed with me!
Hope you get on ok. 👍
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