rituximab infusion: hi rheumatologist... - Scleroderma & Ray...

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rituximab infusion

Jrob14 profile image
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hi rheumatologist recommended rituximab infusion to help reduce symptoms (painful joints, grottons papules, breathlessness, fatigue), but mentioned there are a lot of side effects. Already on Mycophenolate and hydroxychloroquine.

Anybody had this pls, any side effects? How much improvement is expected?

Thanks

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Jrob14
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OldTed60 profile image
OldTed60

I had my first round Rituximab last year September-October. Also on 2g mycophenolate daily. I had a mild allergic reaction next morning to the first infusion but think it was due to not taking my usual antihistamine in liquid form but instead taking it by pill at same time as they started running steroids - which isn’t as effective for me as the suspension due to my scleroderma gut. Second infusion stayed overnight just in case but had no side effects at all. For me iloprost is far worse in terms of side effects. I walked a really long distance out pacing my hubby and dogs when I left hospital - obviously the steroid infusion they give first - but wow that was a brief glimpse of the old able bodied me! I think it’s helped with the night resting pain I get in my legs/ knees and generally my stamina has improved although it’s worn off a bit now - next round in May. Best of luck hope you get plenty benefit without any side effects.

svfarmer profile image
svfarmer

hi I’ve been having Rituximab in 6 monthly infusions for me the only side effect was I don’t sleep on the night that I have infusion , think it’s the steroid they give me before hand but apart from that no side effects and it has really improved all my lupus symptoms x

Lupiknits profile image
Lupiknits

Hello

I had Rituximab infusions last July. I didn’t encounter any side effects worth noting (very tired on the day, and bright red cheeks the next day). There was some decrease in the lower leg and feet problems I was having but at the recent follow up I discovered it hadn’t had the desired effects.

I’m awaiting the future results of various gastrointestinal investigations for them to determine whether the next course of treatment will target the scleroderma or the dermatomyositis.

I’m continuing on mycophenolate and hydroxy

myipad profile image
myipad

Hi, I am taking Mycopholate and Hydroxychlorquine, the latter for almost 12 months, my consultant advised it could take up to three months before any benefit was noticeable. I started to feel much better after 1 month and have continued to improve, however, my optician had picked up a problem with my right eye which may or may not be a result of taking this medication, I was referred to hospital for investigation and have second appointment on10/4 so will have a better idea then of the cause

Karjade profile image
Karjade

I had Rituximab infusions for peripheral neuropathy. I did not have any side effects but unfortunately it did not help. I have now been offered Ketamine infusions but not sure!

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