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Side Effects of RITUXAN

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14 years 1 month ago #17999 by bmost
Side Effects of RITUXAN was created by bmost
I have been looking into the side effects of RITUXAN. The possible side effects sound pretty scary. I would like to hear about experiences with RITUXAN. Not sure that I want to do these treatments since I have read about possible side effects.
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14 years 1 month ago #18007 by CindyL
Replied by CindyL on topic Re: Side Effects of RITUXAN
B, I did Rituxan in Sept./Oct. of last year; had no issues during the four infusions or even afterward. I responded right away with my counts going up after the first dose. I don't know if it's wearing off or not, but my counts have dropped back down to double digits rather than the 3 I've been enjoying.

You'll hear many different experiences with the treatment, but ultimately it will be your choice to do it or not.
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14 years 1 month ago #18015 by ananta
Replied by ananta on topic Re: Side Effects of RITUXAN
There are a lot of folks who have had Rituxan here. Most often any bad effects happen during infusion when the nurses are watching you very carefully and step in when there is a problem. They stop the infusion, or give you more benedryl, or slow the pace of the infusion. And then they can usually continue the treatment. Most of us don't get the scarier possible side effects. I was also very worried 5 years ago when Rituxan was first suggested. I refused for several months. But being put in the hospital every time my platelet count went lower than 6k got old really fast!

Despite my reluctance to accept conventional medicine, despite my distrust with drugs, I decided to trust my Dr. and get the Rituxan. It put me into remission for 4.5 years. One of the best decisions I ever made. I stopped seeing my hemo and I had no health issues at all after that. Until my platelets dropped last May or so. When I realized the bruises meant my ITP was back, I went back to my hemo and said let's do it again!

So here I am, my platelets were 7K in June and 2 weeks after my last Rituxan they were at 176K. I go next week to check them again. Looks like I got my life back and my platelets where they should be.

There is lots of info about Rituxan on this page and on older pages too that you might want to read.

It is your decision. Let us know what you decide and how things go for you!
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14 years 1 month ago #18016 by bmost
Replied by bmost on topic Re: Side Effects of RITUXAN
Oh thank you so much this really helps to read this. My platelets are in the 60,000's now but have been slowly drifting down. My doc will start treatments if and when they reach 30,000's.
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14 years 1 month ago #18017 by bmost
Replied by bmost on topic Re: Side Effects of RITUXAN
THank you , this really helps!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 1 month ago #18020 by Sandi
Replied by Sandi on topic Re: Side Effects of RITUXAN
The list of side effects is long and scary, but most people never experience any of them. A lot of the side effects also mostly affect people who are pretty ill to begin with, or those with a very compromised immune system. Most people with ITP do pretty well. However, it is not a treatment to be taken lightly.
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14 years 1 month ago #18060 by Rhiannon
Replied by Rhiannon on topic Re: Side Effects of RITUXAN
I have just finished first ever 4 week course of rituximab. I tried to look up the details before hand but the doc wasn't that clear in what I was getting. Which was lucky as it did not give me time to get worked up about side effects.

Every treatment we are given always carries a risk of side effects even the every day paracetamol. Everything we do has a risk of side effect. Some sound a whole lot more scarey than others.

The following week I had to sign a consent form and was warned about infection and not to get pregnant within the next year. Fine by me as no intentions of getting pregnant - ever :) Am not a lesbian but pregnancy etc just never interested me so was able to turn it into a joke for the doc since he will meet many who may get upset by the news.

Once I had time to learn the possible risks I got over it by telling myself I cross the road most days of my life and what could be more dangerous than that? People even get killed on zebra crossings - designated crossing places etc. So the likelyhood of something negative happening as a direct result of rituximab is just as likely or unlikely as getting killed whilst crossing the road. I didn't go as far as looking up any statistics of fatalities of pedestrians crossing roads in designated spots but it did put life into perspective and able to 'get-on' with the treatment without any fuss.

I am one of the lucky ones who sailed through the four weeks. Admittedly next day I feel a little under the weather. The first week being the hardest for whatever reason. I sleep well each night after rituximab to say all I do is sit there. I received it on the day ward. First time it took 5 hours on slow so that body can adjust to it and to determine if its going to react. It didn't so all other weeks in been about 3 hours. The worst part is that carparking gets expensive. Highlight - freebie cup of tea. In otherwords for me it was quite a dull experience but that is positive and for now my platelets are up. They were up before the treatment started but if they hadn't a done so - as soon as steroids be alternate days my platelets may well have dropped again. I am now down to 2 steroids for 4 days then one steroid a day until I see him next in clinic on the 19th of this month

Today I kind of feel uncomfortably warmish or me (though have been doing all along this summer and may be the steroids) and under normal circumstances I be thinking that may be I am going down with a cold at vague times. But because I know just had the rituximab in a few days I be okay. Yeh, my blood pressure drops but I have low BP anyway and my temp was 37 last week where as all other weeks been 36. But very uneventful.

We need to read about the side effects but sometimes I wonder if we worry far too much or you get folk like me what admitts that every thing has side effects.... Admittedly am fearful of the brain infection one having had meningitus then septic shock later knowing how lucky I was with each and knowing that this there aint no cure. But life is life and we just have to seize the day because if we didn't do anything any time there was a fatality risk to it then we wouldn't get anywhere when I remember the crossing the road scenario because what has bigger risk than that in all honesty. Plus I do by chance happen to believe in God and he is my greatest reassurance at times about death and heaven and earth and life etc. I've been taught well and learned well and okay that don't mean to say I never fear. Because I do fear - but I have somewhere to place life and death fears and hope I haven't gone too deep for anyone but that is how it is for me and hope that it will provide some reassruance for others.

I have had IVIG in the past and that has caused more immediate problems for me than rituximab has done. I have had shivers and anemia issues (severe enough to be given full blood transfusion on the day I go home)with ivig and haven't had any thing like it with rituximab