Confused

Hi all. Although i follow lots of posts, i dont write on here very often but feel comfortable doing so with friends who understand. I first saw my consultant end of January and was diagnosed with inflammatory Arthritis. Basically they could not say if it was RA or PsA. This was due to the fact that my rheumatoid factor was low. Put on a course of steroids, Ssz and continue with Naproxen.

All going well until I began to react to the ssz with photosensitivity and was affecting my eyes quite badly. Spoke to my Rheumy nurse for the first time who was absolutely fantastic and quite reassuring. After speaking to my Consultant, they agreed that I should stop taking the ssz immediately and wait until my next appointment at the end of March with regards to trying something else. She also asked me to keep a diary. After my last appointment with the consultant, he categorically said that I had PsA as a diagnosis so accepted this even though i felt that they were clutching at straws due to the fact that i have had bouts of Psoriasis in the past.

This week i have received a copy of a letter which has been sent to my GP as part of a HQIP Audit i was put forward for. This i believe (as ive never had it explained) looks into my case, bloods, consultations etc and makes a diagnosis based on the information presented by my consultant. They have reached a conclusion that PsA is an 'unlikely diagnosis '. Under the intervention advice they have said to continue on the steroids, reviewed investigation and check ENA.

Other scores which i do not understand are TJC - 4, SJC - 3.

I feel rock bottom at the moment. Having a diagnosis helped me with my journey but now that this is in doubt and am struggling to continue to move forward.

Ive posted on here in the hope that my HU friends can reassure me that this can happen and that it may take a while for firm diagnosis. It would appear that most of you are experts having been through lots of different journeys yourselves and would appreciate your thoughts. Many thanks in advance x

13 Replies

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  • Well one thing is for sure you have some sort of RA so you know that much. So go with that until you get some more answers. As to all the numbers i am sorry i don't have a clue. If you have an doubt you can always ring your nurse who i am sure will rest your worried mind. Hugs from me.xxx

  • Thank you Sylvi. Its just such a confusing time but i know that counts for many others too x

  • Hi tinat 3, so sorry you are going through this uncertainty, I am the same at the moment. Been in pain for nearly 3 years now first Rheumy done ultrasound scan of hands and feet which confirmed Osteo arthritis, transferred to another Rheumy when the first one left, had another ultra sound scan which shows inflammation in fingers, but not joints, even though he has been treating me for sero negative inflammatory arthritis for the last 12 months, tried and failed MTX, sulfasalazine and now on Hydroxychloroquine for the last 6 months, but nothing helps. In the last appointment he told me that he dosen't think its arthritis, but not sure what it is, could be my fibromyalgia or my diabetes causing diabetic neuropathy, my gp disagrees on both counts. Consultant doesn't want to see me for 9 months, what am I supposed to do now? I take steroids, but can't tolerate strong pain meds, just take max paracetamol. My fingers are swollen and very painful and stiff, toes too. I hope you find something that helps soon, best wishes.

    Jan

  • Sounds like you are really going through it too and sounds a nightmare! 9 months is an awful long time In between appointments. I hope too that you get the answers that you need and soon. Good luck x

  • Thanks Tinat, here's hoping we both get something done soon that actually helps. Good luck

    Jan

  • Hello Tinat

    I suffer from PSA and one of the problems are the blood counts, they do not actually show the RA. element.

    The treatments for RA generally follow a well worn pathway that is very much the same. PSA can effect the joints and sometimes these results may not on your joints as they can affect your tendons etc. When we are in remission this can be a problem as the condition is hard to pick up

    Sometimes with Psoriasis it can just affect the skin or skin and bones. The condition seems to also just attack small joints like fingers and toes. in their own right

    The arthritis can in some instances may not show on Xrays and sometimes scans may need to be undertaken, even then problems can arise and the conditions seems to mask itself.

    if it is RA only this condition can follow the same pathway with more damage in certain joints, medications used are NSIDs, pain medications, DMARDS and Biologics, these drugs are explained in other letters although if required I can go through them again. As I do not know what you are taking.

    Both conditions follow basically the same pathways.

    BOB

  • Thanks Bob. You have made some things clearer. I wish that I'd had some of this information from the hospital appointments

  • Oh my word! I can't believe they just send you a letter saying ok now you don't have it, that's rubbish. I would definitely go bring it up with your gp and ask for a quick review again with your rheumatologist . You must feel like you are somewhat in limbo?

    You need to have a good thorough working diagnosis and treatment and I really feel for you after starting on your journey and not getting well they have themselves stated it" a correct " diagnoses. do go and tell them straight you need this sorting out?? I'm feeling angry on your behalf!! Xx ( sorry) let us know how you get on?

  • Thanks Allanah. Just feel so frustrated atm. Will keep you posted x

  • I'm afraid I'm unable to help from the point of view of diagnosis as I've always been in the fortunate position that my diagnosis being seropositive was firm from the off so I've not had that "cause unknown" type of diagnosis but that's not to say I can't feel for you. It certainly does help knowing what you're up against & in a way with that knowledge can plan a route forward when you have that so let's hope your next appointment is a fruitful & a more positive one.

    The TJC & SJC are part of a DAS 28 score being Tender Joint Count (4) & Swollen Joint Count (3) which is quite good actually but of course out of context without other points of the DAS examination, bloods etc. Maybe keeping a diary will show some sort of pattern which may be helpful to your Rheumy. If you notice any other changes, inflammation or skin wise, it would also be useful to take photos, again this could help your Rheumy understand how you are without SSZ & maybe give him some ideas what he treats you with next.

    It's a tricky old thing autoimmunity for some & you're having a taste of it unfortunately. I hope your Rheumy is able to determine just what's going on & be able to give you a definitive diagnosis next time. Do let us know how it goes won't you?

  • Thanks for clearing up the das score! Its not so much that my joints are all tender but the pain is indescribable as well you know! They don't give you a point score for that lol. As for swollen joints, my ankles are terribly swollen and have been since August. My knees look Alien and my hands and fingers puffy and unsightly with lovely veins! Good job we aren't going into any beauty pageants anytime soon. Will let you know how I get on x

  • There is actually a points score for pain, the one your Rheumy asks you score yourself, the line marked from 0 - 100 or sometimes 0 - 10? Think it's called a global assessment, 0 being least pain & 100 the most pain. Have you not been asked to do that?

    I'm doing reasonably well for swollen joints, all except my ankles as my feet haven't been checked for a couple of years resulting a whole load of trouble according to my Podietrist. Trying to correct as much as possible but it'll be a while before I'm walking correctly again. Fortnightly appointments ho hum. I hope you get sorted properly though, I remember how it was to have such pain & it's no fun. x

  • I have a lot of uncertainty going on with my diagnosis too. Like Jan I'm very drug intolerent which means my rheumy has taken me off meds and watches and waits - 9 months since last apt - next one a week today. I find the lack of clarity very hard going. I'm a fighter by nature but I do need to know what it is I'm fighting! I have nerve pain much more than joint pain these days. I've never had Psoraisis but apparently, just to confuse things further, you can have PsA without any Psoraisis - and Psoraisis with RA. Who would be a rheumy eh?! My GP actually misinterpreted the results of a lumbar puncture and I only found out it was too contaminated to be reliable when he handed me a letter from my neurologist and told me to take it away and read it.

    So I know very well how it feels to get told you have something showing up - only to find in letter form that you don't! Take care - hope you get some answers soon. Twitchy

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