rituximab reactions

[Alex830]

I have had 4 rituximab infusion and each time I have had a reaction. The first time time they had to stop the infusion because I had reached the max of Benadryl and Demerol. I was told this happens a lot the first time but unfortunately every subsequent infusion I have had reactions, mainly rigors and coughing. Last infusion they pumped me full of steroids and still got rigors twice. Kind of dreading next week’s infusion although I have to say the steroids did give me a lot of energy the next day. They also ran it slowly, was there for over 6 hours. Anyone have had the same experience? Does it get better? Any advice , tips? Still got three more months of infusions and hoping it will get easier.

[SofiaDeo]

Ask if you are a candidate for the Rituxan subcutaneous injections. Then you won't have infusion reactions.

[AmCLL in reply to SofiaDeo]

Hi Sofia, hope you are keeping well and be enjoying the warmer weather soon. Please are you able to write a little bit more about the Rituximab subcutaneous injection. My specialist is suggesting these for me but would not tell me much about them, I am wondering if these would present other similar side effects as the infusions apart from the regular infusion reactions that normally occur. I am not sure whether or not my writing makes sense. Much appreciated.

[SofiaDeo in reply to AmCLL]

The monoclonal antibodies are large molecules, like immune globulins are. Even when a molecule is "normal" in our body like immune globulin, having a concentrated form infused into us makes our body react. It's not something the body ever does naturally. So the docs use various premedications to minimize these "infusion reactions". Some people get "used to" some of the drugs, and after a lower test dose, or initial infusions, their body stops reacting so strongly. Similar to how many here report they get test doses of obinituzumab, and after the first problematic infusion the others go OK without serious problems. So sometimes our bodies adjust to us getting these types of medications, and don't continue to react strongly when continuing doses are given.

But some people still react, despite the premeds. The desensitization protocol just doesn't work for them. Rigors and coughing aren't associated with a "true allergic reaction", so the reaction going on does not seem to be a "true allergy", just, someone's body reacting to the large molecule infusion. These sustained infusion reactions aren't good for us. We are releasing various inflammatory chemicals, and sustained inflammation causes things like temperature spikes, respiratory problems, muscle shaking, etc.

So the developers of rituximab designed a subcutaneous(SC) form. Other large molecules, immune globulin comes first to mind, have successfully been given SC. Any potential side effect of *the drug itself* can and may still happen, but the "infusion reactions" won't happen. The body reacts differently to something going directly into a vein, versus getting injected under the skin. The drug gets into the bloodstream much slower. So any rapid infusion type reactions don't occur. It's possible to get some sort of reaction, but it usually would be minimized. When I was doing a trial of a subcutaneous monoconal antibody veltuzumab, I never had any kind of "infusion" reaction. When I did a subcutaneous treatment of alemtuzumab 3 times a week for 16 weeks, I had a single episode of "shaking" after mmmm 6 weeks? It lasted maybe 1/2 hour, there was no fever or breathing problems or anything that needed hospitalization. So perhaps this was a true "drug side effect" that happened once, perhaps for some reason the injection happened to get into my body faster than usual, or I happened to suddenly get a burst of CLL cell death, but whatever, it only occurred the one time.

The biggest side effect I noticed was pain if the nurse injected "too fast", and if the bevel of the needle wasn't pointed exactly straight away, relative to my skin. If one doesn't make sure the bevel is 180 degrees opposite the point of entry, the skin may "core" and this can hurt. It's like a large pin stabbing you, nothing major, but it can make you tense up. So if you try this, just ask them to make sure the bevel is pointing up away from your skin before starting. And ask them to slow the injection rate down if you experience pain. I found the first few times were a bit uncomfortable, but once I got over the "ick factor" of having to sit quietly watching this needle stuck in me, it was fine. I got used to the feeling of the injection. You do get premeds and have to stay around a bit, but it's not for hours and hours.

drugs.com/rituxan-hycela.html

rituxanhycela.com/

[AmCLL in reply to SofiaDeo]

Thank you so much Sofia, your explanation has encouraged me even more to look forward receiving Rituximab injections. You have offered me relaxation and my nerves feel much calmer now. 👊

[Cammie]

drink loads of water.

The positive is that at least you know the rituximab is doing it’s job!

Bare in mind this drug targets b cells and if your count was high enough to start treatment then the little blighters are dieing off pretty quickly thus the body is reacting to this change.

All meds have side effects but we all react differently. Sounds like you medics are on the ball so good luck for the next visit to the cocktail bar !

[SeymourB]

Alex830 -

I had a reaction to my first partial infusion of a similar drug, obinutuzumab. My blood pressure crashed, I got a fever and rigors that last for 2 days or so. I did not have it on subsequent infusions a week later. But by then, my WBC and ALC were much lower. I was also on pirtobrutinib, which helped bring down the numbers faster. I'm in a trial at M.D. Anderson.

I see from your Profile that you have had acute kidney failure in the past.

Are the doctors taking blood draws the same day or day after your infusions to check your uric acid, creatinine, phosphorus, potassium, etc? I agree with Cammie that you need to hydrate a lot when doing these infusions - a gallon of water a day.

Will you be getting any additional treatment besides the Rituximab?

=seymour=

[Alex830 in reply to SeymourB]

I also take Venetoclax. I relapsed while on acalabrutinib. Get bloodwork done before and last time also after.

[SurvivingCLL]

Hi Alex! Sorry you're having problems w/your infusions. Sounds like your issue is w/the other meds & not the Rituximab itself. Have you had previous issues w/them, or no prior use? Perhaps the best thing to do is discuss these issues w/the pharmacist who deals w/the infusion center. Explain your reactions. Perhaps there's an alternate form of infusion prep that can be used. You're given these meds to counteract potential known reactions to the Rituximab. Maybe you need yet another med to counteract the side effects of the meds for counteracting! Anything is possible; we are NOT ALL the SAME! I certainly wish you all the best w/your treatment!

I've had my fair share of issues w/treatment over the years. I've been through chemo w/Rituximab & others many times. Main thing to keep in mind? Keep your eyes on the PRIZE! I was diagnosed in 2003. This June will be 20 YEARS for me & I'm doing well. There IS LIFE after diagnosis & it takes time to find the right meds in the right combination for the right amount of time. You & your Oncologist are a TEAM & for best results, TEAM MEMBERS need to share information so that all involved are on the same page!

Before you know it, YOU will be sharing WISE ADVICE to NEWBIES & the resolution to your current issues will be available to someone who is experiencing the problems YOU have long since RESOLVED! May God Bless You RICHLY & carry you through this adventure called life w/love & dignity! 🙏🌹🌄

[MyCLLJourney]

When I first had Rituxin back in 2012, I had it 3 times and no issues at all. Then I had the 4th, and that went good too. But less than a month later I got terrible myalgia pain so bad I could hardly walk. My next appt with my onc, I told him what had happened. He wanted to hold off on my next treatment to see how things went. When I went fir the next one, everything was back to normal. Here said I couldn't have Rituxin again because the myalgia was most likely caused by it. They noted that I had an allergic reaction to it. But then, in 2020, i got encephalitis. They had to get my WBC down quickly because the encephalitis was caused by my white blood cells. So even tho my chart said I was allergic to it, they still administered it. I had no reaction and I came out of my catatonic state right afterward.

[Big_Dee]

Hello Alex830

I had rituximab along with bentamustine. After but not during infusion I had fevers, rashes and hiccups. Five days of hiccups is very draining :). After round two I asked doctor if I could continue liquid Benadryl and Tylenol for an additional 24 hours after infusion ended. With doctors' approval I did so, and it greatly reduced my reactions. Blessings.

[autoteach]

Had Venetoclax & Rituxan with no problems! Before that had Imbrutinib, hated that, stopped after 8 months. Imbrutinib gave me Afib! Now I get IvIg every month. Blood counts staying in normal range. Had CLL 16 years!