I have Cold Agglutinin Anemia due to indolent CLL. I have been on W&W. My doctor wants to start Rituximab infusion since my hemoglobin had gone down to 8.2 on my last visit.
What has been the reactions & results to any one having Rituximab infusions?
Hi emg112253,
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I've had 15 infusions and usually only the first in a series can be "interesting." The staff will pre-medicate (allopurinol for 2-3 days and 30 minutes before the infusion an antihistamine like Benadryl and a steroid) . Then will start you on a very slow drip rate and watch you closely for early signs that might lead to anaphylaxis reactions. They will then pause the drip and wait until the reaction subsides.
webmd.com/allergies/anaphyl...
en.wikipedia.org/wiki/Anaph...
Later infusions are likely to be boring.
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Len
Hi. Len has summed it up perfectly. I personally have had 7 infusions, having my 8th on Tuesday. The only reaction I have had was my first. I got a little short of breath so they stopped it for around 5 minutes then continued with no issues. You will be fine. Best wishes.
I just finished rituxamb for pure red cell aplasia, other than a bit of fatigue I had no issues at all, I’ve been told it’s well tolerated,
I hope you get an awesome result from it
I have had 6 rituxamb infusions, and I broke out in hives/angry red rash during the first one. I was given extra Benadryl, paused the infusion, and once the rash started fading, the infusion was continued. It was the only one that caused me any trouble. My main annoyance was that since I had a reaction to the first infusion, they gave me so much Benadryl every time I went in that my legs would jerk. I had no idea that mega doses of Benadryl could have that effect, but it definitely did.
As Len said, the first can be "interesting". Even the slow rate turned out to be too fast for me and eventually the initial infusion was abandoned and I came back the next day to finish it. That second day was uneventful - although everyone on the ward was watchful in case there were any repeats of the drama of the first day.
Subsequent rounds (One every four weeks - six in all) were indeed very boring - particularly as they had learned to do things slowly for me, so it did take quite some time for each one. I should add that, apart from doing it slowly, there were no extra precautions taken for the subsequent rounds.
Hope that helps - and hope that all is uneventful for you
Hi
I had 4 infusions and experienced intense itching only during the first. The itching originated around the right temple area, moved around the back of my head to the left temple and then reversed direction back to the right side. This lasted about an hour and a half. Dose titration was paused during this time but then resumed when the itching subsided. No other side effects.
Good luck!
Thank you Did it result in helping your condition?
Yes - this was in 2013 and the course of chemo was very successful resulting in no treatment for several years. When I once again had a neck-full of enlarged nodes I joined a clinical trial and currently have little sign of the disease.
Did you feel safe to go back to doing everything you always do after the last treatment? Would you travel within 10 days of your last treatment?
A little bit of context - I received Rituximab within a course of FCR - not on its own - so things may have been different for me - although I should also say that it is ALWAYS worth remembering that each individual will have different responses to drugs, so whilst it is undoubtedly helpful to know what others have experienced there is no guarantee that you will find things to be the same.
As I said in my initial post I received Rituximab every four weeks for six months and there was a definite pattern to how I felt - the first couple of days after there was little effect. Then three or four days of getting progressively worse - I always felt at my lowest around day six and it would take me about a week to 'recover'. There was nothing 'serious' just feeling very unwell generally.
After the sixth course I began to build up my strength again - and it was only then that I realised that the previous six months had taken quite a lot out of me - even a short walk was quite an effort. Would I have travelled within 10 days? Depends on what the travelling involved. I certainly wouldn't have been able to do anything strenuous after such a short time - indeed ten days after my final treatment I was probably thinking that I was "good to go" but then finding out that I was a long way down from where I had been before treatment 😂
My consultant suggested that I should not return to work for around three months - and then start back slowly and build up to full time again.
Hope that helps
Hi emg112253
To give you the timeframe, I was diagnosed on March 5, 2020, a week before Covid shut everything down in my vicinity. I had a 6.3 cm enlarged lymph node excised from my armpit. There were 2 smaller ones in the same area and 3 in the sub-pectoral area. I was treated with radiation in these areas and with Rituxan for wherever else in the body there were enlarged lymph nodes. This occurred during mid April - mid May 2020. During August 2022 (2+ years later), my GP noticed an enlarged lymph node near my collar bone during a physical exam. It measured about 1.5 cm. I recently changed to a new oncologist as my previous oncologist retired. While discussing my CLL/SLL history with the new oncologist, he mentioned that Rituxan is "good" for about 2 years. Between August 2022 and May 2023, the lymph node doubled in size to 2.8 cm, about the size of a large marble. It was excised on May 31st. The diagnosis was the same. I am not on any treatment now as my blood is normal and I have no symptoms such as night sweats, weight loss, fatigue or fever. He stated that if I do develop symptoms, then he would consider starting me on some type of treatment.
When I was first diagnosed, my oncologist expressed interest in treating me with a proven monoclonal antibody, such as Rituxan, rather than a newer one. Rituxan efficacy results showed treatment to be quite effective. My oncologist explained that my CLL/SLL was slow growing and that I would do well with Rituxan. She recommended that I reserve getting treated with newer antibodies until and if the CLL/SLL becomes more aggressive. Deciding which monoclonal antibody to be treated with is a difficult question to answer. I am on Medicare. Although cost was not an issue for me, from the standpoint of insurance coverage, since Rituxan is administered as an IV in a doctor's office, there is no cost. It is free of charge. For a monoclonal antibody in tablet or capsule form taken daily by mouth, insurance coverage can be quite different. So insurance coverage may need to be taken into account.
Hope this is helpful. Please don't hesitate to contact me again if you have any questions.
Regards
Alan
Hi emg112253 -
I have had 12 Rituximab infusions, 8 a week apart, then 6 months later, another 4, again a week apart. I had no reaction or side effects at all to any of them during or after the infusion, but everyone responds differently. The earlier responses to your question summarize well what can happen.
I've had Rituxan with FCR/BR/VR and as a solo med. The only reaction was for the very first infusion where I reacted with rigors, but was quickly dealt with. Really no issues. During my VR treatments, we changed from the infusion to the injection, which really cut the time down for the treatment. It may be something to ask about. Best wishes with the treatment.
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