Help me ask the correct questions please

This is only the second time I have posted I really hope you guys can help me. Lower back and pelvic pain for many many years physio pain relief nobody every believed me. About 5 years ago I started with psoriasis then developed golfers elbow tendinitis, then X-ray confirmed OA in both my knees.about 18 months ago came the right hand pain swelling and because of this I was sent for injection the nurse who administered it was lovely it was her that contacted rheumatology I waited nearly 6 months for the appointment X-rays of the hand showed I had OA in all pip joints and a few MCPs including thumb MRI showed severe inflammation in both SI joints and lower spine as well as the bursa sacs in both hips. June last year I returned to see consultant diagnosed with Axspa with peripheral involvement PSA ? I started biologics in august Amgevita after chest X-rays and ruling out TB etc my Crp level was 200. No improvement by Nov which is when I originally posted by Christmas I was in so much pain I was admitted to hospital and put on steroids. Which done the job appointment in Jan / feb both got cancelled so now I’m getting to the point of this long winded post. March 2nd more steroid shots into hips and buttock, March 15th crp levels 65, March 22nd consultant app said we need to change biologics and have another MRI yesterday I got a phone call not expected, to tell me I have fusing in the lower spine so Axspa is now ankylosing spondylitis I was told biologics would hopefully prevent this from happening and in such a short time. Have I just been very unlucky or let down. Could this have been prevented if I had been believed all them years ago?

question - what alternative could I be asking for my head is spinning trying to read up on everything. I did mention methotrexate and sulfrazine two that I had heard of but my reply was no good for spine involvement so I went straight from ibuprofen to biologic

any advice would be most welcome I am really worried about what my future holds.

angela

Comments

  • Baloo
    Baloo Member Posts: 359

    Im not surprised your head is spinning since Arthritis is so weird. You never fully know where its going to come from. I would hazard a guess that your future is going to be somewhat "unpredictable".

    I listen carefully to what the medics say and was told from the start to keep a timeline. I do this in a pocket folder so I can insert medical letters as well as my own descriptions of what is happening.

    In my latest flare up my left shoulder has given way, it won't lift my arm without pain. Its always been a problem but this is the first time in a long while its been out of action. To be honest until then I was more worried about my knees.

  • stickywicket
    stickywicket Member Posts: 27,608

    Not all types of arthritis lend themselves to swift diagnosis.. i was diagnosed very quickly with Stills Disease. That was over 60 years ago and it is now RA. My husband has, in the last 6 months developed what now seems to be gout despite two blood tests showing it's not. We are complicated beings.

    I think if you're clear in your own head what you want to know then you'll ask the right questions. This moght help. https://www.versusarthritis.org/about-arthritis/conditions/ankylosing-spondylitis/

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • jamieA
    jamieA Member Posts: 612

    Hi @AngM

    I can understand your worries. I'd never heard about immune mediated inflammatory arthritis before it struck me in 2020. I was in hospital a number of times and saw a number of different rheumatologists. I had various diagnoses - gout, Ankylosing Spondylitis, Polymyalgia Rheumatica, Osteoarthritis and Psoriatic Arthritis. I think it's hard for the medics to tell when you present with a specific issue as these diseases can seem so similar. I was told that the state of my sacroiliac joints were an indicator of PsA - as well as my psoriasis history. Seemingly about a third of psoriasis sufferers get PsA and of those about a 3rd also get enthesitis - which I've also been diagnosed with.

    My CRP level reached 340 at it's worst - though I also had pneumonia at the time - but now my blood tests show it at around 1. I'm on a cocktail of 3gms sulfasalazine daily, 10mgs MTX weekly and bi-weekly injection of Amgevita and that seems to work for me as I'm relatively stable. The last consultant I saw said the 3 drugs working together produce a better outcome than each individual one - 1+1+1>3 as she put it. At one point they thought I was generating antibodies to the Amgevita and had planned to move me onto Secukinumab which is also recommended for PsA. I remember a conversation with the senior rheumatology nurse who said it was good I had responded well to the first biologic as there were 7 they could have tried. I recently met a PsA sufferer who was on his 4th biologic - so I don't think it's an exact science.

    The last consultant I saw said it was good that I was treated early as this limited the damage to my joints and that they were looking at progressing patients more quickly onto biologics to lessen the damage.

    I hope you can get a solution soon.

  • AngM
    AngM Member Posts: 3

    Thank you i think I understand more how difficult it will be when I present with overlapping symptoms I start anew biologic on 4th May so fingers crossed. That makes sense about treating earlier as I had no other treatment other than ibuprofen and pain killers. Straight to biologic I will bare in mind about the 1+1+1 =3.

    angela