The Pain is Unbearable
Hi everyone, I apologize for the long post in advance it's the first time I've ever posted anything like this on any kind of website.
Flares and uveitus
I have just signed up as I am hoping for some advice or guidance on what to do about my AS, or just to talk to people who so suffer as I am suffering and who can understand. I was diagnosed in 2015 with AS and suffer extremely bad flare-ups. I'm 25 years old and I've already had 3 steroid injections in my eyes because of severe uveitis flare-ups which have caused me to go blind.
I have tried Cosentyx and Humira to manage my condition which both gave me terrible side effects. Humira caused me to have really bad pustular psoriasis all over the palms of my hands and all over my feet which has not gone since stopping the medication.
Treatment side effects
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 in 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 agonizing 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 banister. I need some sort of support, or to hold on to the arm if the chair, etc to do the everyday things which aren't always possible due to my psoriasis. So then my partner has to pick me up, all the while caring for my 7-month-old son is extremely difficult both physically and mentally. I feel like there are 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.
Do you use the word disability to describe your AS?