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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Is Anyone Taking Rituxan Infusions? Has It Helped With Your Lupus? Have You Experienced Side Effects?

A MyLupusTeam Member asked a question πŸ’­
NW Oklahoma
September 25, 2017
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A MyLupusTeam Member

I've been on Rituxan for 9 months. The infusions can be scary, headache and sore throat, etc. After the infusion it works really well for me for the first 3 months, and the only side effect I've had is fatigue. Of course, since I'm already exhausted from lupus, it is almost impossible to manage. It's the first time I've been symptom-free in years though, so I'm sticking with it and hoping the fatigue goes away.

September 29, 2017
A MyLupusTeam Member

Here's my answer from a previous similar question :

"Honest answer time:

I started Rituxon infusions ~ 3 weeks ago. The first session went well. They did the infusion slowly and did not give me a full dose (I am quite small right now, I don't think they wanted to give too much). It took a few hours but went very smoothly, no reactions or anything. The next day I had some "flu like symptoms" but was told this is normal.

I went for my second infusion 2 weeks after the first infusion. They were planning on giving me a full dose at a faster rate, but still not at the "rapid" rate of 90 minutes. Within the first 15 minutes of the infusion starting I was short of breath and turned bright red. They pumped me full of steroids and Benadryl and got me stable. After I was stable they restarted the infusion but at a SUPER slow rate. 15 minutes into that I started showing the symptoms of rigors (uncontrollable shaking, my Raynaud's appeared) and they pumped me full of more steroids and Demerol. Needless to say they did not continue with any more Rituxon that day.

Just know that the nurses know what they are doing and will jump into action immediately if you do show any signs of an adverse reaction! But there's a good chance everything will go smoothly too :)"

First time was end of June second attempt was beginning of July. My doctor says that even though I barely got any it seems to have helped a bit though. I have no plans of trying it again though, that second time was not a fun experience!

September 26, 2017
A MyLupusTeam Member

My SLE is very active right now........has been for a year or so. I was supposed to have my first infusion the first week of Sept. I honestly just got very anxious about it and put a halt to it. My daily pain has gotten worse and I am tired all the time. Sed rate very high....I feel I need to give the Rituxin a chance but I remain unsure.

September 27, 2017
A MyLupusTeam Member

I just started retuxin. Went for my second dose today. After my first dose I had a little flair up with joint pain , fatigue. achy, confussion, vision problems and balance Kinda like a mild flu too lasted for about a week. Just fatigue so far today.this time. We will see how tomorrow goes. hoping it's worth it

October 20, 2022

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