I started round 1 of BR last Tuesday and had a severe reaction to the rituximab on day 1 where I suddenly felt extremely ill and faint following by a bout of vomiting for several minutes. The symptoms were overwhelming and terrifying and I thought I was going to die. I was told it was because the speed of the infusion had been increased and the first infusion is the worst. Since then I feel very unwell and frequently faint and weak.
Has anyone else had similar reactions to Rituximab and do the symptoms reduce as the treatment progresses?
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elizdonohoe
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Seems a bit severe for rituxan, my goodness... what premeds were you given and how did they resolve it, or did they just stop the infusion? You never had the bendamustine?
I experienced rigors 10 hours after the first rituxan infusion, uncontrollable shaking, teeth chattering... but after the first infusion everything has been fine and I have had twenty rounds of RITUX... 😋
There is the possibility that you are allergic to mouse protein in rituxan, and you can now be tested for this.. certainly push this matter with you doctor...
The resolution would be to switch to a fully human CD20 monoclonal antibody, like ofatumumab or Gazyva... perhaps
Another option might be subcutaneous rituxan, which does not have the infusion side effects, and only tales 10 minutes to administer, if there are no allergies.
The infusion was stopped immediately and steroids and anti sickness given which alleviated the symptoms quite quickly. After that the rituximab was restarted but at a slower rate and I didn't have any further reaction. The only premeds I was on was allopurinol and acyclovir. As far as I'm aware I wasn't given any anti- sickness beforehand so not sure if this is correct procedure! I did end up having the bendamustine with no reaction.
Depending on how round 2 goes I will then consider alternatives if there's a similar reaction. Many thanks!
Strange ...the usual premeds are a tylenol and benadryl... and often with FCR or bendamustine/rituxan [BR] , then Prednisolone is also given orally, or by a bolus push IV.
I always got 50mg of IV Benadryl and Tylenol before Rituxan. Some friends have also been given a steroid. I would definitely ask about pre meds. Also keeping the infusion slow. Most people who are going to have a reaction do so with the first infusion, and then are OK.
I just had bendamustine because Rituxian gave me anaphylactic shock. They tried it a second time in the ICU AND I HAD ANOTHER REACTION. The bendamustine worked for about 3yrs. Now I’ve been on Imbruvica for 5 years. It is a hell of a ride. !
I had rigours on first rituximab infusion. Not my first ever. Just first on a treatment The following ones should be fine. Rituximab is an excellent drug.
Rituximab can do that on the first infusion and centres are trained to react. Yes it is an awful feeling you think your end is near. My blood pressure dropped to 50!
But you recover and the next time is OK. I always had to have Rituximab dripped in to me slowly but it did it’s job.
Fear will be there on the 2nd infusion but you are now aware when to call for help and you know they will come running. Few react to the second infusion.
That's very reassuring as have been rather apprehensive about round 2. Feel rather upset that it appears that no anti-sickness premed was given beforehand, only when I had the reaction, which doesn't seem right.
So, you are in control. Ask them before treatment if you should have anti sickness treatment. Always tell your consultant how you have fared, good and bad. The consutants job is to get you through this.
Thanks to the info I've received here some questions will be asked prior to round 2 re round 1 and In view of my initial reaction will be requesting premeds. You are quite right - it's now time for me to to set the agenda next time round. Many thanks!
At my first set of 4 weekly infusions at a sketchy doctor's office infusion clinic, I had similar reactions to yours, even with Tylenol, Benadryl and steroids. Over the next 3 infusions I was able to switch to Lortadine (Claratin) taken at home to avoid groggy headaches and reduce the steroids.
After a 6 month pause, during the initial infusion of 4 more weekly, an inexperienced nurse started me off without any steroids and only my self administered Lortadine. Hives and rigors resulted in the doctor responding in a code blue type reaction to prevent anaphylactic shock. The next 3 were uneventful and by the last, I was off steroids and got the full infusion in 3.5 hours, vs. 8 hours for the first week.
My take away- the real professionals will explain the pre-meds to you and know how to respond. If the nurse still has training wheels on - demand to talk to the top sergeant nurse and get it sorted before they hang the first bag of Rituxan. Don't assume they know what to do- make certain they convince you to trust their knowledge and experience.
If you are not an assertive person, bring along a friend or relative that can kick a__ & take names to watch you for subtle reactions (itchy ears, facial rash, itchy chest, etc.) each time they increase the pump rate. Don't be a compliant passive patient in an infusion chair!
You poor thing! I think many will empathise with you. The first infusion of ritux can be pretty awful.. I had a reaction after about 20 mins.. BP plummeted and I passed out.. Had to be rushed to a side room and have iv fluids.. Happened again when restarting the infusion but was not as bad. I did not manage the full amount of the rituximab however I had a great response after round one with lymph nodes reducing in size dramatically.
Each round (fcr) improved and my final round was at full speed...
Many thanks! Your post is very encouraging as I seem to be sinking into despair from feeling so awful. For the last 18 months on W & W my haematologist advised that Bendamustine/ Rituximab was gentler than FcR so I (probably naively) didn't expect to feel quite so bad.
It helps to get feedback from people like yourself on this site who've been there and come through. Thanks again! x
I know how you feel. I worked until the day before fcr but then felt awful.. I went in feeling well and positive and came out feeling anxious and yucky! You're not on your own x
Hello. I had a similar reaction during my first infusion. The medical team stopped the treatment for around 20 minutes & administered hydration. When the infusion resumed all was ok. I have catalogued my journey on this forum from diagnosis to present day. Please feel free to browse & i do hope it is of some help to you.
I agree with above. Had rigors twice. Definitely the speed makes all the difference! Had the right meds but it is when they rush it through-what`s their hurry? These drugs are serious and we`ve never had them before until the first time and they should treat us the way they`d want to be if being infused with any chemotherapy. They probably get so used to doing it and don`t consider the few who may have a serious reaction. Tell them go slow-even if it takes longer to do. I`m sure it will go good. Didn`t know about the subcutaneous version. Just getting Bendamustine this time.
Think it's for their convenience - they just want you gone so they can go home! I suppose to an extent it's understandable as the first treatment (Bendamustine & Rituximab) take a minimum 8 hours (mine took over 9 because of bad reaction). By then it was after 6.00 and I was the last one standing!
its best have earliest appointment next time just be safe. They`re getting paid to do this and as nurses their first concern should be the patient. They can still go home to their families and life but if we have a bad outcome, will staying one more hour which may not happen very often matter if we are not ok?
I had one rituximab infusion and was back in hospital the following day - not very well. Nursing staff confident that cause was obviously rituximab, consultant on the fence. Started balance of Bendamustine but 8-10 days after each infusion back in hospital with sepsis. Bendamustine stopped after fourth of cycle of six. Consultant insisted that I had signed the form authorising him to ‘poison’ me, not kill me.
I also had a problem with the rituxan, quite a severe reaction on my first day of chemo, we got around that by giving me half the bentamustine then the ritux then the other half of the bentamustine the next day seemed to do the trick as i sqiled through all my sessions afterward, been 8 years in remission so doing good .
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