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Rituximab Side Effects Question

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3 years 5 months ago #72344 by WSHELTON
Rituximab Side Effects Question was created by WSHELTON
Hello All
Had my first dose of a 4 week schedule of Rituximab and for 3 days I had Extreme pain from head to toe. Now 4 days out I'm weak and sore all over with headache. I'm afraid to continue with the next dose. Any feedback on your side effects and how you handled I would appreciate 
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3 years 5 months ago #72345 by JJ
Replied by JJ on topic Rituximab Side Effects Question
At the moment I do ritux every 12 weeks for lymphoma and have those side effects for a couple of weeks after each one. I am finding that it gets a bit worse each time! Good luck!
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3 years 5 months ago #72346 by WSHELTON
Replied by WSHELTON on topic Rituximab Side Effects Question
Thank you for your reply, sorry for your pain and good luck to you too.
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3 years 5 months ago #72347 by CindyL
Replied by CindyL on topic Rituximab Side Effects Question
I did Rituxan in 2011 and didn't have any issues with it.  I sailed through all 4 doses with flying colors.
Good luck to both of you!
  • CJENNIGES
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  • Newly diagnosed with ITP. Mom of 3 amazing humans. Very active in outdoors, family life, friends.
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2 years 7 months ago #73050 by CJENNIGES
Replied by CJENNIGES on topic Rituximab Side Effects Question
Hi. I had my first of four Rituxin infusion on Wed.  Had a reaction 3/4 way through.  Finally finished after a push of Benadryl and was sent home. Thursday I felt good. Was able to drive. Friday, I am dizzy, lightheaded, no energy, and emotional. Anyone else get delayed side effects? How long did they last?  Thanks 
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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2 years 7 months ago #73051 by midwest6708
Replied by midwest6708 on topic Rituximab Side Effects Question
My experience was different.  I had several reactions during the first infusion, but got through it.  That evening and the next, I ran a low-grade fever and felt flu-ish.  The second infusion was much smoother, but I developed serum sickness afterward and never took the last two. 

Each Rituxan experience is probably as unique as the person who undergoes it, and no one can predict what it will be.  I hope you're feeling good by now and will have few problems going forward.   Most of all, I wish you success from having done it! 
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11 months 1 week ago #73711 by Margaret
Replied by Margaret on topic Rituximab Side Effects Question
I've just had my third treatment of rituximab. Excellent effect on platelet count - first treatment increased 20ish to 87, second up to 129, third treatment today, blood test next week. No serious side effects, but two unpleasant ones - weight increase (not huge, but uncomfortable) and fatigue (luckily I'm retired so not too disastrous, I do everything I always do, but a bit less of it, and I sleep 12 hours !!! every night). All worth it, if the count stays up-ish 🤞
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10 months 3 weeks ago #73731 by Margaret
Replied by Margaret on topic Rituximab Side Effects Question
After completing 4 weeks of Rituximab - I had good results for two weeks (22>85>129) but then two drops (>58>56). Still a reasonable count, but quite disappointing after the early improvement. I'm now back on Mychophenlate, which I really didn't want to discontinue when the haemotologist took me off it.
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10 months 3 weeks ago #73734 by MelA
Replied by MelA on topic Rituximab Side Effects Question
Margaret did you tell your hematologist you did not want to go off Mychophenlate - did give you good reason to go off it and use Rituximab? Do you have problems when your count is in the upper 50s? How long after completing the 4 weeks of Rituximab did your count drop to the 50s? Is it possible that you could still have a good response to Rituximab?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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10 months 3 weeks ago #73735 by MelA
Replied by MelA on topic Rituximab Side Effects Question
I tried to edit my response to you Margaret to ask if ....... did your hematologist give you a good reason to go off Mychophenlate and use Rituximab
Sorry my fingers didn't get it right in the first post and I couldn't edit it to make it right
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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10 months 3 weeks ago #73738 by Margaret
Replied by Margaret on topic Rituximab Side Effects Question
Thanks Mel.
Sorry, I misspelled Mycophenolate!
The haematologist wanted me off it mainly because of possible long-term side effects (eg increased risk of cancer), but also I think to check whether I still needed a treatment, at that point.
My count dropped to 50s *during* the Rituximab treatment - increased after the first two, then dropped. I had the fourth and final treatment 10 days ago, and the subsequent blood test showed a slight further drop (58>56). I have no problems with that count but I'm concerned it hasn't stopped dropping, because Mycophenolate takes 6-8 weeks to kick in. Strangely, the haematologist said he'd see me in 6 weeks and no need for any blood tests until just before that appointment. I think this is rash. I plan to have another test in two weeks.
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7 months 3 weeks ago #73789 by MelA
Replied by MelA on topic Rituximab Side Effects Question
Margaret I'm sorry, I just saw your reply today - had no clue it was here!

How did your last count go?  I think maybe your hematologist was seeing how you would do off everything, maybe even go up in count - sometimes good things happen that we don't expect - but we should get a count if we are not comfortable with what is going on, our body our decision to get a count.

Talk to you later!
Melinda
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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7 months 3 weeks ago - 7 months 3 weeks ago #73791 by Margaret
Replied by Margaret on topic Rituximab Side Effects Question
Thanks Melinda.
I had a test 2ish weeks ago - 135!! - just before reducing mycophenalate to 1 x 500mg a day. Haemotologist still/again wants to wean me off mycophenolate because he is unsure about long-term effects. I'm taking the line that this is his chance to learn about the long term - I come from a long-living family (mother 98, very healthy) so he may be able to track very long term (I'm 72 ) ...
😂
How are things with you?
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7 months 2 weeks ago #73792 by MelA
Replied by MelA on topic Rituximab Side Effects Question
Margaret I am so excited for you - 135K, WOW!!!    I am sending good vibes and thoughts and prayers that the increase continues for you!!!     I'm doing ok - I don't recall my last count, wasn't that long ago but I try not to remember them :) it was good though.   Getting my 2nd Shingrix injection in a few weeks so hoping that won't do anything to the count.

What does your research say about mycophnolate?  How long has it been around?  Bless your Mom, 98 and healthy is amazing!!   My Dad passed just shy of his 95th birthday, but he had fallen and broken his hip and that is never good.

Your cat makes me smile - one of our GrandCats was black with green eyes - leaving his house one day I looked up and he was in the 2nd story window, the only reason I knew he was there was because of those 2 green eyes, it was so funny!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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7 months 1 week ago #73804 by Margaret
Replied by Margaret on topic Rituximab Side Effects Question
So research shows it has been used 20-30 years, mainly for transplant patients. My recent blood test showed 89, which is down a bit after halving the mycophenolate dose, but a good count. Today's haemo (I see two, depending on schedules) says long-term use is fine. Some transplant patients have used it for 20 years without problems.
Hope your shingrix goes ok. My mother had her second recently and had a strange reaction - the distinctive burning pain of shingles, but a completely different rash, just on foot and hand. Cleared up after 3-4 days. I didn't have such a dramatic side effect, just a bit achy and fatigued. Better than full-on shingles!
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7 months 1 week ago #73809 by MelA
Replied by MelA on topic Rituximab Side Effects Question
Margaret, I agree 89k is a good count!  And that is with a 1/2 dose of your mycophenolate.   Good to hear it has been used 20-30 years without problems!   Let us know when you have another CBC!

Strange reaction your Mom had with #2 Shingrex!   I have that, without the rash, since having Shingles May 2024 - no rash but the post-pain.  Seriously, Shingles is the pits!!

Talk care!
Melinda
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: Margaret
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