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← Return to Rituxan infusion concerns
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I'm scheduled next month to have my second Rituxin infusion for ScleroMyocitis. It has helped me to be much more functional. The only issue I have had was with serious nose bleeds. I have controlled angina and had a cardiac ablation for AFIB two years ago. The cardio surgeon increased my Eliquis prescription to 5 mg twice a day. Two days after my Rituxin infusion the nose bleeds started, getting progressively worse. The Rituxin caused my platelet count to drop substantially, causing the nosebleeds. I finally got the cardio surgeon to take me off of Eliquis. Now I am monitored 24/7 with my Apple Watch. The nosebleeds have stopped, with no recurrence of AFIB. I would simply suggest that anyone with a heart condition requiring blood thinners or anti-coagulants discuss with their cardiologist close monitoring of platelet levels and possible dose reduction or elimination of those prescriptions. I'm also on IVIG treatment three consecutive days per month.
Otherwise my experience with Rituxin has been very positive. I hope all goes well for you.
Replies to "I'm scheduled next month to have my second Rituxin infusion for ScleroMyocitis. It has helped me..."
@jomac
I’ve been On Rituxan for 17 yrs for RA. i had allergic reaction, itchy throat after abt 15 mins. They gave me prednisone and Benadryl to calm it down. I was able to continue the 1000mg. For 17 yrs they give me Tylenol, iv prednisone and Benadryl prior to starting Rituxan. The infusion took about 5-6 hrs. A couple yrs ago they decided they speed up the infusion took about 4 hrs. No problem until the second day I started having problems with chest pain. Couldn’t sleep on laying down or either side, had to sit up It has worked just fine. Had some shortness of breath. After couple days I felt better. I didn’t think much of it so this continued. I got Rituxan every 6 months 2 treatments, 2 wks apart. Finally in feb this year I had another Rituxan treatment. Same thing happened again. Same chest pain & shortness of breath. I finally realized I didn’t have this problem when they let the infusion run longer. So I called the doctor and advised them of the pain I was having and thought it was because of the faster drip. Because I never had the pain when the drip ran slower. Two wks later when I went in for my second infusion they slowed the drip back down. It worked. No pain. Other than that Rituxan has been a miracle drug for my RA.
@jomac Regular IVIG carries a black box warning for thrombosis so if you're off Eliquis, I am hoping they either run your infusions super slowly and that you hydrate like no tomorrow or they have you on a product like Alyglo. We went through the dilemma of whether to continue IVIG as I'd already had 2 DVT's but I still wanted to try . . . however, they found a clot in my brain after my first round of IVIG. After lots of second opinions with hematology, rheumatology, neurovascular, and neurology - it was decided that SCIG was a considerably lower risk option than IVIG given the clotting issue, even though I remained on Eliquis twice daily. Lowering or discontinuing anti-coagulation therapy on IVIG might depend on the source of the clotting, but after 2 clots, the general consensus is lifelong anticoagulation. so discontinuing on IVIG is generally not recommended due to the increased risk of thrombosis.
Good to hear that Rituxan is working well for you 🙂
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@jomac
Thank you for the information about possible anticoagulant and platelet problems. I also had the ablation about 5 years ago and have been on Eliquis and now Xeralto. I really feel like they have me on a dosage that's a bit high but have a plan and don't deviate from it. I will voice my concerns with the cardiologist and see what they recommend.