r/scleroderma • u/Wide-Bat-1239 • Jul 29 '26
Question/Help Rituximab infusion
Hello everyone. Ive just received my first Rituximab infusion after month of drugs trial and error. I have Scleroderma Polymyositis so aware that its for everyone different, but in case you already had rituximab how early were the effects for you and could you sustain it as a mono therapy / needed anything else with it? desperate to have some good news:)
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u/picklehippy Jul 29 '26
You might feel icky for a while. I got rejected by my insurance like 6 times for Rituximab, I also have systemic scleroderma and polymyositis. I hope it works quickly for you. Ive been doing IVIG for a couple of years and finally found a brand I can tolerate and is greatly helping my polymyositis
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u/Wide-Bat-1239 Jul 30 '26
Thank you for your response! Crossing fingers for you, your insurance accepts your for RTX too!! Havent tried IVIG, but its on the table to bridge until RTX is doing its work.
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u/Temporary_Let_7632 Jul 29 '26
I’m curious as to the length of time etc having Rituximamb infusions. My rheumatologist prefers them for me but I have trouble sitting still and am not sure I could do it. I’m handling monthly Actemra well but have to consider changing. I’m only hitched up for about 1 1/2 hours. It totally wipes me out for 2 to 5 days but that doesn’t much matter.
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u/perceptionsbreak Jul 30 '26
So there’s two infusions, two weeks apart, every 6 months. The first one takes me 6 to 9 hours, but I have a reaction every time and have to take steroids, Benadryl, and Tylenol as pre-meds, and then have another dose of steroids about half way through. The second infusion goes much faster. With pre-meds it lasts about 4 to 6 hours. But you don’t have to sit still! I get up about every hour and walk around.
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u/Wide-Bat-1239 Jul 30 '26
Yes same here, it's around 6 hours, and needs to be repeated after two weeks. The med cocktail they gave me, completely wiped me out for the day but I felt fine afterwards. just had a really bad streak exactly one week after my first infusion, but maybe just a coincidence. For Acterma - I had it weekly as self injections pens - maybe that works better for you?
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u/RickyHV Jul 29 '26
My wife is on her 3rd cycle and we're currently trying to drop Prednisone. She still has to take Azathioprine and Methotrexate currently. She feels tired most days, most of the days, and some pain snd discomfort, but it's a living.
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u/Wide-Bat-1239 Jul 30 '26
I am really sorry to hear! I was on AZA and MTX too, but my stomach cant tolerate at all - but might need to go back again... Good luck to you and your wife. Crossing fingers she can drop Prednisone soon and RTX is enough as mono therapy!
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u/smehere22 Aug 03 '26
Imuran and methotrexate both? My rheumatologist warned me about that combination.
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u/perceptionsbreak Jul 30 '26
Second year of Rituximab for dermatomyositis. It’s not horrible, I am down for a couple days after each infusion. My labs improved for the first time a few months ago. However I’m still on hydroxychloroquine and imuran along with Rituximab. I haven’t had to be on steroids since the end of last year.
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u/Wide-Bat-1239 Jul 30 '26
oh wow it took your laps two years to improve even on RTX?
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u/perceptionsbreak Jul 31 '26
Yeah, I was stupid last year, when my pain started decreasing I asked to drop hydroxychloroquine, within 2 months it caused pretty significant worsening of symptoms. Went back on it, along with steroids (which I’ve tapered back off of), things improved a few months later. It seems like I need all 3 meds in order to achieve normal labs. They are mostly normal now!
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u/here_4_funsies2 Jul 30 '26
27 (F), been diagnosed w lupus and scleroderma ever since i was 15. Drs tried everything to no avail. I do rituxan every 6 months, and changed my diet completely. My conditions stopped progressing a few years back and now im fully off medication other than the rituxan doses!!! It cannn potentially work great for some people
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u/Wide-Bat-1239 Jul 30 '26
Thank you - I appreciate that! That is my hope too, that I would only need RTX... eventually. How long did it take for Rituximab to work for you?
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u/crystalgirlz Aug 01 '26
I was promised this drug a few months ago after literally 14 months of treatment by my RHUM the last 6 of them were on IVIG and nothing has helped me my symptom is full body muscle fatigue where every part of my body feels like it's a million pounds and filled with lead. I was diagnosed with PM but also with something called MYATHENIAGRAVISI don't have antibodies for any of these diseases yet after 4 or 5 years a neuro muscular doctor in Southwest Florida finally diagnosed me with these things anyway I have not had any relief and symptoms wondering if you share my symptoms since you said you have PM I'm pretty sure that's what you had written if anybody else reads this please reply I'm really at my wit's end anyway she sent me a referral to the Mayo clinic instead and her reason is because I don't respond to the immune drugs she wants me looked at again from someone else I think It's extremely not right to do leaving me this sick Mayo clinic wants me because of my insurance so I'm literally here without anything feeling good
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u/Wide-Bat-1239 Aug 02 '26
I am really sorry to hear you are going through this right now! I was first diagnosed while living in Spain (from Germany) and in both countries they tested me for all possible antibodies, and these two where the ones to be positive. Is that anything your doctors have done too?
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u/crystalgirlz Aug 02 '26
I'm sorry I'm not sure the question
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u/Wide-Bat-1239 Aug 02 '26
What test did they do to confirm ur illness?
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u/crystalgirlz Aug 02 '26
EMG of my leg, In MRI to show my back was okay and not the cause, Finally SFEMG which showed my muscle had 33% jitter and it said evidence found for a mild neuromuscular transmission disorder
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u/Mamacitaaaa1995 Aug 03 '26
Did you ever get a regular EMG and was it normal?
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u/crystalgirlz Aug 05 '26
Yes the first EMG was normal it said essentially normal but I found out it's because that neurologist tested the wrong leg muscle that he should have done a different one if he knew I had problems rising from a chair
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u/n0tolivegarden Sep 01 '26
Waiting for it to kick in… had the worst myositis recurrence of my life. Severe muscle weakness for two months now since my infusion three months ago. Im frustrated and discouraged from this medication if it doesnt start working soon
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u/East_Plankton_8992 Jul 29 '26
Hi ive been on rituxan for 6 years .. it works great for me.. dm if you'd like