The Pain is Unbearable

By zoeleighx

2 min read

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.

Feeling lost

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.

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iris Member
I’m so sorry for all that you have gone through. I have had AS since I was 16 and I’m now 42. I have opted not to use the medications you mention (I have reasons) so I can’t speak to those. I used NSAIDs most of my life and now have ulcers because of it so I can’t take NDAIDs anymore. So my next and last route is trying medicinal CBD. I’ve done a lot of reading (US and international research) and a lot of people with auto-immune illness have seen significant success. I’ve lived with hopelessness and excruciating pain like you but I’ve also had times in between with very low inflammation, was able to hike, travel, and live with reasonable chronic pain. Since going strictly vegan, my inflammations have reduced by over 60%. It was a game changer. I still love sugar and fat but eliminating animal products has made a huge impact over time (I was a mega cheese lover!). My biggest problem now is stiffness and curving of my spine. I got a hip replacement when I was 30 and will need the other side do e too at some point. I now try very hard to follow a daily regiment of stretching to ensure I maintain a straight as possible spine. The illness is constantly pushing you forward, especially when you are inflamed, and while it’s extremely hard to push through the pain of stretching, it’s everything if you want to avoid other related problems that happen through curvature and not moving. Movement is everything and it influences your pain level. Rheumatologist in the US don’t place enough emphasis on it, in Europe it’s part of your treatment plan for AS and seen as crucial for managing your future and your pain. I will let you know how I do with the CBD (it’s legal where I live). Hang in there! There is no magic - I struggle thought terrible flare ups where I still experience hopelessness and desperation. But I live for the moments in between. Are you doing anything other than taking the meds?
Lawrence Rick Phillips Moderator & Contributor
I did not find this to be the case with Cimzia, I found it to be a relatively easy medication to take and i tolerated it well. I am so sorry this has created this problem for you. I am not for sure where you are located, but I am guessing not the US because of the reference to your weight in stones. I this happened ot me I know I would be able to see the rheumatologist in fairly short order. I think must people in the US would agree that this would be the expectation for our doctors. However, we also have to arrange and pay for our own care. So things are different. I wish you the very best. I think I wold still telephone my doctor if it were me. I hope whatever you do, this gets better soon for you.