RA, rituximab and everything…

andy99

hi gang, I’m new on here but have had sero negative RA diagnosis for ten+ years. Last year I had first two infusions of rituximab. My rheumatologist seemed fairly delighted my inflammation markers had reduced significantly but honestly I’m in agony with especially my hands. You can’t do anything without them!! My gp prescribed co codamol and now just recently pregablin. I just wondered how other folks are managing and if this is normal…because I feel worse than ever!!! I don’t think that was the intention (hopefully!). I know we are all different but I just wondered if peeps with similar diagnosis and treatment felt same or different. The pain element is really hard to cope with but then anything you take for that has side effects too… I guess I’d just like to compare notes with someone else as with anything it’s difficult to get your head round unless you’re going through it yourself!! I’m Andy (53 and female) pleased to meet you guys! :)

claudsl

Hi @andy99 :) Firstly, a massive welcome to our online community. We are glad to have you here!

I don't have any personal experience with this particular drug, but I did find an article which might have some useful information.

Rituximab | Side-effects, uses, time to work

Hope this helps a little at least, and hopefully someone with better knowledge on this medication can advise further!

All the best, Claudia x

TiredWarrior

Hi @andy99,

I started on Rituximab last year and for the first time in >15years my markers are near normal.

I did have 3 pain free days but then the pain came back. I have been going for hydrotherapy regularly and have got some muscle strength back but am still unable to even walk in my garden due to pain

As per my rheumatologist, the pain I still feel is due to fibromyalgia & not due to RA

I have tried various things including medication for nerve pain like the pregabalin you have been given. I’m not sure if anything is helping. I find a very gentle massage that increases in pressure gradually works best (but only for short periods). Warm baths help (but I can’t get in or out of a bathtub) & so hydrotherapy helps.

Your pain might be different but because of the medication given to you, I thought it might be similar.

Someone else I know was on Rituximab for 5years - she told me that the best effect was only after the second or third round of infusions. So I’m hoping things will improve. I’m due my second round now and pain is definitely much worse so it must have been working.

Best Wishes