Rituxan infusion concerns

@glongdmd Welcome to Mayo Clinic Connect! I’m going for my every 6 months Rituxan next Tuesday! I always look forward to the infusion because I feel better—physically and emotionally! To be honest with you, I did have a reaction to my first infusion. The doctor decided that the reaction was NOT to the medication itself, but to the speed of the infusion. So, the infusion was slowed down and there have been no more problems! The stafff usually give Tylenol and Benadryl just before the infusion to increase comfort while there.
The infusion usually takes 2+ hours so you’ll want a good book and snacks.
And no problems after! I’m always a little tired because of the 1+ hours to get there and everything is so different. I go to a university hospital in the city.
I’ve not heard of anyone having a hard time, so go and enjoy the nurses!

I get Rituxan every 6 months for a dermatomyositis overlap syndrome. Initially I was getting an IV Zyrtec and steroid beforehand - but I’ve since asked no more Zyrtec as it makes me drowsy, so just the steroid. My infusion is about 4-5 hours. No side effects from the infusion itself. I bring my laptop and a sandwich and the infusion center provides snacks and drinks.

I am also on Methotrexate and Medrol (a steroid) so I am triple immune suppressed so I try to be very aware of my body. I got a UTI recently, took the recommended 5 days of antibiotics, but 2 days later, the symptoms were back. The old me would have waited it out. Now I know can’t because it could quickly escalate - I called the doctor to let them know and they put me back on a stronger one for an additional 7 days immediately. It is going to be important that if you don’t feel well on Rituxan that you not ignore symptoms and be aware when you don’t feel well that you reach out to your doctor and let them know.

I avoid being in crowds in cold and flu season unless I really have to, so then I mask. I don’t accept invitations to holiday parties, weddings, etc from October until the spring, I don’t eat out in restaurants in that same period. Catching a cold leads to bronchitis and triggers COPD that can last up to 6 weeks, which just isn’t worth it for me, so I accept everything that is outdoors or while the weather is nice, and try to avoid anything indoors or during cold and flu season since I don’t have a functioning immune system. Covid was brutal for me and I never mounted a response to it; it gave me blood clots and lung nodules so I’m always terrified of Covid. However I have just started SCIG so I am hoping that the donor immunoglobulin will help and I’ll be able to do more during the fall and winter.

I think the most important thing is that I am starting to feel better on Rituxan than I did before I started it and my disease has been resistant to every other drug I’ve tried so far. Good luck! Hope it works for you too!!

Thank you for sharing your experiences. I think I'm
just holding onto to some post-COVID medication apprehensions and am still highly suspicious of any type of "new" medications especially for autoimmune diseases since treatment seems anything but standard and efficacious.

@becsbuddy I concur with beesbuddy's experience. Mine is every six months as well. I have pretty much the same reaction. Drowsy during the session, but back to normal duties that night or the next day. Yes, bring something to do during the session. The length of time depends on the rate of speed for which they set the infusion. Each session should take less time as your body gets used to it. I ask for a window seat, so I'm not staring at a wall for 2-4 hours. I take public transportation there and back. I would not suggest driving to the session. Wishing you great results.

I think I get 3-4 hr infusion every 6 mos for my MS. I am going ask the docs if they can speed it up…been doing the 4 hr routine for 6 years now. No side effects, steroids they give me make me feel like Superman for the days .

@glongdmd I am actively awaiting a Phase 1b drug (Azer-Cel) for MS. My prev neuro recommended for this treatment but timelines didn’t add up. New guy suggested going back to a tried and true drug; but been RR now for 25 years.

Drop foot and inability to drive wants me to get back into it!

I’m on Rituximab for severe systemic Sjogrens with resulting ILD (lung disease) and also positive for RA. Started last Dec w the two doses and then two doses in June. My infusion center pretreats w Tylenol, Benedryl and infused steroid. W that cocktail I need a driver for sure. My infusions take about 4 hours all in. The initial dose was delivered very slowly to watch for problematic reaction. None. Next dose they sped up, no problem. Third dose at 6 mo and faster speed I started having a reaction so they had to stop and dose me w more Benedryl and steroid and we were able to finish w no problem. Next dose at slower rate no problem.
Post infusion I’ve had no issues other than a couple days of infused steroid zoomies which override the Benedryl drowsies.

I have not had any joint flares since starting rituximab! Such a relief. I take no other meds for this except had to do a prednisone blast once as my lung HRCT showed slight inflammation. So far it seems to be holding my lung damage steady.

Biggest downside is the complete wipe out of B cells which is why it works if it works for you. So all the protective measures others mentioned! Since my lungs are so damaged I am extra cautious. Hard w my grandkids as they’re in preschool and middle school and always have something going around! Thankfully my daughter vaccinates. Whenever I feel like taking risks I think of “is it worth being intubated in the hospital?” I see my mayo pulmonologist in two weeks to assess lungs, seem stable. I’ve been able to do very helpful pulmonary rehab which would’ve been a nonstarter w my joint pain during flares before.
I wish you the best and hope that rituximab works for you!

I have had two rounds of Rituxan for ANCA Vasculitis. It took about 6 hours for the first infusion but then it wasn’t about 4 hours. The first round was 4 infusions a week apart. The second was a little over 6 months and it was 2 infusions 1 two weeks apart. I see my doctor in November and will go on 1 infusion every 6 months. I too was concerned about them but honestly it was so much better than I expected. I had flu like symptoms for a week or two after the first set. I also had increased bone pain but I think that was from the Prolia injection I had the Friday before! Don’t do that! The next one was another or so after my Prolia injection and I had flu like symptoms after the infusions. Then a few weeks later I suddenly had so much energy I didn’t know what to do! I have Prednisone for flares if I need it but I hate the stuff so only take it sparingly. I had a reaction to hydroxychloroquine so that’s out. So far I have been blessed as far as lowered immunity due to lack of B cells. I am around a far amount of people at church but avoid other big crowds and practice hand washing. My other option at this point is Methotrexate but I am not willing to do that right now because I would not be comfortable with being out and about! Maybe someday!
Someone else mentioned the steroid zoomies and I also get wicked munchies! The Benadryl was IV and gave me a rush the first couple times and I slept between vitals checks but after that it wasn’t a problem.
I hope you don’t have any issues and it helps you.
🙏🙏

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.

I went through 4 infusions of Rituxin for my autoimmune disorder. I didn’t notice any side effects when I was on it. I have Long QT Syndrome as well, which is a heart rhythm issue. I was given Benedryl along with it and that may have helped too. Unfortunately, Rituxin didn’t solve my autoimmune problem but it’s an ok drug. Good luck to you!