Posted , 3 users are following.
I would like to get a discussion going for patients taking Rituxan infusions. I have been on infusions for 2 1/2 years. I have so many side effects I have a long list. I wanted to talk to others and see how you are doing with it. There is a LOT of conflicting/extraneous/useless info out there. Thanks and Good Luck to All
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linda1947 momziee
Edited
i have been on rituximab infusion which, i assume is the same type of biologic. i have been on it for about 5 years and im sure i do have side effects from it but i also have weekly methotrexate injections so it hard to know which one is the culprit. i have been on methotrexate for 12 years but the side effects definitely got worse with the rituximab.
momziee linda1947
Posted
Yes, it's the same drug. A few months in, my doc started me on weekly meth. injections at home. It really kicked in the good results from the Rituxan, but then I started feeling REALLY bad. For nearly the whole week until the next shot was due. Doc weaned me down but after a couple more weeks, I just said Stop, because I was feeling literally poisoned. Things got much better. What does your doc say about how you feel? I feel sometimes as if he healed me- incredible improvement in daily pain and having more energy-but I also just am taking this stuff with no real idea how I am supposed to be feeling. I've been having infusions for 2 1/2 years. I have had at least 30 side effects, at different times. Some stay; some are only there for weeks. It's maddening really, I just can't ever get to Good. I get to Better...I'm 62 and I've had RA since about 14. Diagnosed at 35. I have a lot of damaged joints, so maybe I can only look forward to no more damage. Just pain and constant fatigue. Of course, I have good productive days, sometimes 2 in a row but egad I pay for them for days after. I do too much! So tell me what's going on with you. And sending a hug and a wish for you to feel better.
linda1947 momziee
Posted
Hi,
Well, where do i start. i was diagnosed 13 years ago. i am 72 years old now. it took about six years for the doctors to get my medication right. at first i was on methotrexate tablets which were making me feel really ill so the hospital changed me to weekly injections which made a big difference. However, my RA was still not under control so they added sulphasalazine. Wow, that was a mistake! I lost my sense of taste and smell so that was a no go. That is when they suggested the new biologic drugs. My first infusion went well. After a few weeks i felt so much better, but the side effects kicked in after about six months. The first thing i noticed was the tiredness, but the kind of tiredness that sleeping doesnt cure. Then i started having trouble with what my GP thought was irritable bowel syndrome. I am convinced that this is a side effect of the rituximab, I also find this to be the most difficult thing to deal with. It affects what I eat, when I eat etc. It is really debilitating.
Also, what I originally thought was hay fever turns out to be a side effect of the rituximab. My nose literally streams for most of the morning.
Hair, what hair? lol. It is so thin and gets worse with each infusion.
But all this doom and gloom about rituximab, will I keep taking it? Too true
i will. Better the side effects than the pain.
hope this helps, stay well and safe xx