I've had everything from 'it's all in your head' to maybe vasculitis, RA, blah blah blah...and then PsA.
Just read a letter from rheumatologist I saw her last week, was given IM steroid and an increase in leflunomide. Letter now states undifferentiated arthritis.
I do wish they'd make up their s&dding mind! The tone of the letter sounded slightly disbelieving of my resent flare too. Though I doubt she'd give me steroids to shut me up...would she? 😳
Given the potential side-effects of steroids I'd think it very unlikely you'd be given it if there weren't grounds for it (such as your symptoms in the flare).
Some rheumatologists continue DMARDs for Undifferentiated Arthritis because there is some indication that they can be effective in slowing or preventing disease progression: ajmc.com/journals/supplemen...
Are you to continue with the Leflunomide to slow down the progression or is there a suggestion that ceasing the medication might encourage clearer symptamology/imaging findings to manifest (tho' that would be unfortunate if it resulted in unnecessary bone or joint changes)?
Undifferentiated inflammatory arthritis possibly means that it's not possible to make a definitive identification of the inflammatory arthritis that you are living with at present. It might help to maintain detailed records (written logs plus photos of swellings, skin/nail changes, rashes etc. etc.) to provide possible indicators over time of whatever this is.
Hi thank you for reply
I've had all the symptoms of PsA. Toenails falling off, bilateral Achilles tendinitis, bursitis, rashes on scalp,ears, and body, Swollen toes. Also had Bakers cysts on both knees (both burst).
Feels very much like I'm being messed about. To be fair, The leflunomide is doing something, though still have some issues. That has been increased from 10mg to 20mg.
I have been given a different diagnosis at various times throughout my 49 year journey with this ****** disease. I have decided that I will call it Rheumatoid Disease especially after reading the RA Warrior articles and the different ways in which different people experience it - and also how very different THAT is from the way in which Rheumatoid Arthritis is classically described.
I have an auto-immune disease. It affects my joints giving me episodic synovitis. It has, in the past, affected my bone marrow. It may well be affecting other systems, but no-one is looking, so I don't know and don't particularly want to. I also have dry eyes and rosacea.
I take my meds, my inflammatory markers are currently behaving themselves and I would cross my fingers if I could. The label they give me doesn't matter as long as I get treatment that keeps me reasonably well - even if the rheumatologist says "You are under-treated" and I say "Whose fault is that?".
My progress is more like Psoriatic Arthritis, I'm glad to say, but I don't have psoriasis, and my sister, who has the same gene profile as I do, has more aggressive RD, but of only recent origin, and she had Giant Cell Arteritis as well and lost some sight because of this. So even if we have similar gene profiles, the disease behaves differently.
So your guess is as good as the consultant's - research your OWN condition as you will be the expert at it - and demand good treatment.
I'm not surprised you're sick of the whole thing. While it is undoubtedly difficult to diagnose different forms of inflammatory arthritis, I sometimes think it's not quite THAT difficult.
Toenails falling off ..... oh my, how much more evidence of PsA do they need? I'm not a doctor so what do I know? Well all I do know is that some rheumys seem to strive for a definite diagnosis more than others. And I'm pretty damn sure that when toenails fall off and you haven't just completed a marathon then PsA is a very strong contender.
Second opinion time??
Is this the fungal toe v. psoriatic toenail conundrum? Altho' the two frequently co-exist? I still have just the one affected toenail that has never corrected since 2014. I'm thrilled to report that if it's a fungal infection, it's never spread to my other toes or foot nor to anyone else in my household. And, I'm still in the, "Is it scalp psoriasis or implausibly localised seborrheic dermatitis" mire.
My GP can't refer me for even a 1st opinion as the local CCG won't permit rheumatology appointments in the absence of sero+ blood work, plus, I still don't have obvious synovitis etc. (normal CRP and ESR) - just the symmetrical, persistent morning stiffness in my small joints.
Having had other family matters on my mind (and a spell of falls and injuries), and as I don't seem to have deteriorated but seem to be maintaining in this state, I have to admit that I haven't pursued a diagnosis. But, I am considering a private Ultrasound scan to see if there's some synovitis or bone/joint erosion of which I'm not aware because I was surprised by the deterioration of my hands during a recent virus (correcting now the virus is clearing).
Wowzer! Are you sure re. CCG not allowing rheumy referrals to people who are not seri-positive? But ... but .... words fail me. How about a private appointment? They can move things on if you can afford it.
Nail samples can be sent to pathology for investigation. Mine came back as 'not fungal' and that was sufficient to clinch my PsA diagnosis. I've heard that a positive identification of psoriatic nails is also possible, maybe mine were indeterminate or maybe the test didn't go beyond excluding fungal infection. A couple of years ago I had a biopsy of a an area of skin in case it was skin cancer. And that did come back as psoriasis. Again, I'm wondering how much a private biopsy of skin samples might cost.
If I could afford private tests for nails I'd go for it.
I saw three different GPs with nail problems. I got blisters under four toenails, they went brown and dropped off. I currently have an issue with one nail on left foot.
Docs couldn't tell me what it was but said not fungal. At the same time I had agonising bilateral tendinitis, and was so stiff I could hardly move.
I begged for a referral. If it hadn't been for another medical professional asking GP to refer me to rheumatology, I'm pretty sure I'd be in an horrific state.
Not sure why rheumatologist is faffing about. She has seen and noted swollen toes, Achilles issues, and knee probs. I think I might ask to be referred to a skin specialist as I don't think she is aware that there are different types of psoriasis.
I've had a look around but can't even see a price for nail testing. It's a little interesting because I've had non-fungal difficulties with my big toenails for decades where is was almost impossible for them to grow to any length before falling off.
I hope that you can obtain a referral to a dermatology clinic - do you think it might help firm up the diagnosis for your rheumatologist albeit it seems pretty clear to you who is on the experience end of living with it?
I know I'm fortunate that my problems are just in the small joints of my hands and parts of my feet and they're not more widespread.
Yes, sadly, I'm sure about the CCG. I'm in an area where all elective surgery has been cancelled for some time and there are various clinical privations/restrictions. The first question out of a GP's mouth is pretty much, "Do you have insurance?".
Even where GPs are requesting rheumatology referrals, CCGs are instructing depts. to cancel appointments if there are no +ve indicators from blood work (as above) - there'd be some wiggle room if I had demonstrable synovitis or at least an elevated CRP/ESR but I don't.
I was wondering about having the nail tested but had read that it's not that unusual for a psoriatic toenail and fungal infection to co-occur. E.g., "About one-third of people who have nail psoriasis also have a fungal infection". psoriasis.org/about-psorias...
I'm possibly being a bit cavalier by not pursuing a diagnosis but I'm assuming that it's either very mild PsA or symmetrical erosive osteoarthritis - and altho' the latter is sometimes treated with DMARDs, I wouldn't qualify for it as, again, I don't have raised inflammatory markers. So, overall, the treatment is probably NSAIDs, whatever the diagnosis is, and it will continue like this, stabilise, or deteriorate.
It's a real pig getting doctors to refer if seronegative. Mine just saw the lack of RF and dismissed me.
It's exhausting trying to get them to listen. In the end I wrote s letter.
I feel your dilemma. I have gone from RA to PsA now and will wait for the one day something else diagnosis. At least they are treating you, I have just gone nearly a year with nothing and I can tell you that wasn't fun. I am now waiting for a script to be approved to start cosentyx for now diagnosed PsA with no skin involvement.
Sorry you are having the same issue Someonesmother.
I was in fact left in agonising pain for two years, due to complaints falling on deaf ears at GP practice.
I am grateful to have some treatment now. I note with sarcasm, the inclusion of fibromyalgia to my differential diagnosis. I have no symptoms of fibromyalgia.
Oh I know that one too. I refused that diagnosis recently and stood my ground. The registrar had to back down on that after I spoke to head of rheumatology.
Well I hope that things start to work and that the steroids work for you. I am living in hope that the new drugs work for me and no side effects.
Always poorly!!! Grrrr
PsA
Newly diagnosed: Undifferentiated Inflammatory Arthritis. Drug advice. Unexplained bruising. Raynauds. Migraines and cluster headaches.
Undifferentiated inflammatory arthritis taking sulfasalazine 
Now what?! 🤦🏻♀️
