Ankylosing Spondylitis Help — Scope | Disability forum
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Ankylosing Spondylitis Help

Zoeleighx
Zoeleighx Member Posts: 1 Listener
Hi everyone, I apologise for the long post in advance it's the first time I've ever posted anything like this on any kind of website. 

I have just signed up as I am hoping for some advise or guidance on what to do about my AS. I was diagnosed in 2015 and suffer extremely bad flare ups, I'm 25 years old and I have already had 3 steroid injections in my eyes because Ive had severe uveitis flare ups which has caused me to go blind. 

I have tried cosentyx and humira to manage my condition which both gave me terrible side effects and humira caused me to have really bad puscular psoriasis all over the palms of my hands and all over my feet which has not gone since stopping the medication.

I now have a 7 month old baby and have recently started cimzia. The first 4 doses were 2 injections and I saw a huge improvement on my condition I was able to exercise again and could do more than I have been able to in a long time which was amazing. 

Since reducing the dose to 1 injection every 2 weeks I've had a massive flare up, my back is extremely painful which makes it difficult to move, and my knees are in agonising pain to the point where they cannot hold my body weight (I'm only 11 stone) to be able to stand up. I can't get up off the sofa, walk up the stairs without using my arms to hold my weight in the bannister. I need some sort of support or hold on to the arm if the chair etc to do the every day things which isn't always possible due to my psoriasis so then my partner has to pick me up, all this while caring for my 7 month old son is extremely difficult both physically and mentally. I feel like there's so many things I'm not going to be able to do with him and he will miss out on it's just heartbreaking. 

I feel a bit lost as to what I can do going forward, my rheumatologist is extremely difficult to get hold of, and even if my doctors do this it's always weeks before I can see anybody (that's if they even have appointments with the covid situation). I can't continue struggling like this it's not fair on me or my son.

Has anyone else found this happening when on cimzia? Or know of anyone struggling like this? 
Any help or advice would be appreciated, thank you so much for reading.

Comments

  • Adrian_Scope
    Adrian_Scope Posts: 8,578 Scope online community team
    Hi @Zoeleighx and welcome to our little community.
    Unfortunately I've not seen anyone mention using cimzia before, but hopefully someone else will be along with their experience.
    Community Manager
    Scope

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  • janer1967
    janer1967 Member Posts: 16,492 Disability Gamechanger
    Hi @Zoeleighx Welcome to the community great to have you on board.

    I am not familiar with your condition or medication but think you should seek some further advice from your GP and also probably a care needs assessment from your local Occupational Health Service you can self refer for this on the gov website and they will assess you and your home for any suitable equipment or adaptions you need

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