Rituxan infusion concerns

I have Wegeners vasculitis! I have several infusions of RITUXAN. Saved me !

@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.

@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.

Thank you for the useful information. I've been given diphenhydramine, but not not prednisone and benadryl prior to Rituxin. I do get Benadryl prior to IVIG treatments which helps prevent side effects. I'm glad this has worked well for you. I hope in future without the Eliquis I won't have more nosebleeds. I'll be sure to have my platelet count check before and after the infusion.

@glongdmd
Usually after a year or two the Eliquis or Xeralto can be reduced or stopped if no AFIB recurs. I had to beg the cardiac eletrophysiologist to stop the Eliquis. Other people I know that have had ablations have been removed from the anticoagulants by their doctors after a year or two.

Not exactly a similar comparison, had four infusions each on Friday. All four went fine. I was warned five hours for first running infusion slowly to watch for reactions. Warned also, overnight if reaction too strong and too long. One turned out fine, 2nd infusion faster no adverse reactions, 3rd faster and zero reactions, 4th rapid and no reaction.

Next morning, I believe my progressive MS kicked in and it was angery. I was unable to get up from bed without help and unable to walk even with help. Ambulance was called, they took me to hospital ER and doctor had staff take me to intensive care. One day and night with blood transfusion and usual array of fluids. End of the second day, moved to regular room for basic walking with walker therapy, followed by moving to therapy wing for nearly two weeks.

Unfair comparison, I have MS, Sjogren’s Syndrome, Evan’s Syndrome, composite heart valve, permanent arrhythmia, and a long list of other complaints.

@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 🙂

@pm56 Thank you for this valuable information. I will discuss this with my rheumatologist, cardiologists, and neurologist. I've been on IVIG for two years, but the Rituxin is fairly new. Currently the IVIG infusions are gradually titrated and take about 3 1/2 hours after magnesium and prednisone are done. This may need to be slowed because of the elimination of Eliquis. I do have monthly CBC panels prior to IVIG and Rituxin infusions and watch the numbers carefully. I think perhaps I might also need to do this after the Rituxin infusion. The bleeding started two days after the first infusion. I wonder whether a lower dose of Eliquis could be resumed at some point after the Rituxin infusion, but prior to IVIG. So far I've seen no signs of clotting, but it only takes one. I hate playing roulette with my medications.

Thanks again for the information.

@jomac I’m not sure what your underlying condition is, but maybe SCIG might be a possibility instead of IVIG. There’s a lower risk for clotting as it’s infused slowly under the skin weekly - rather than in much higher doses monthly directly into a vein. If you are going to continue with IVIG, make sure to hydrate lots and ensure you advocate for a slow infusion rate. I joined an IVIG/SCIG group on Facebook run by a nurse (Beth Duffy Garret) who was an infusion nurse for over 40 years and she’s an amazing resource as are her moderators. It is worth joining and reading the “featured posts” tab in the top left on the home page - I learned so much before I started my first SCIg infusion which was helpful.

There is a geriatric dose as my hematologist referred to it of 2.5 Eliquis. We toyed with lowering my dose since I seemed to be doing so well 4 years since my last DVT but then the CVST happened and that was that lol. Good luck to both of us on Rituxan and IG!

I had Rituxan infusions for Pemphigus Vulargis in 2004 (4 infusions once a week) and then 2nd round in 2005 (2 infusions). After first 2 infusions, lesions started to heal and after 4th infusion, PV was totally gone. My doctor at John Hopkins in Baltimore, suggested I do a 2nd round 6 months later as I was still weaning off prednisone. 21 years later and PV has never returned. FYI, My doctor advised I would have no side effects and he was correct. Good luck and pray this works for you, too.
Barbara