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Rituxan side effects

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12 years 8 months ago #32477 by mkreid
Rituxan side effects was created by mkreid
I am 26 and have had ITP for 12 years. I am no longer responsive to prednisone, dexamethasone, IVIG, promacta and never responded winrho. So I started Rituxan. I just had my 3rd treatment. Absolutely no side effects after the first 2 and counts are already on the rise. After my 3rd, I had a fever, chills, bad headache and flu-like symptoms. Then I developed joint/muscle pain in my wrists and ankles, bad enough that I have no grip strength, can't even hold up my phone. Most forums say that any problems usually occur after the 1st treatment.
Anyone have a similar experience?
Thanks!

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12 years 8 months ago #32479 by eklein
Replied by eklein on topic Rituxan side effects
It is possible it could be a serum sickness reaction from the first treatment, it usually takes a few weeks to occur.

You should consider not having any more Rituxan. It could get way worse. And, Rituxan may be just as effective with only 1, 2 or 3 infusions. My second time I only had 2 infusions (due to a really bad reaction) and I've been in remission for over 3 years.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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  • 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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12 years 8 months ago - 12 years 8 months ago #32482 by Sandi
Replied by Sandi on topic Rituxan side effects
Yes, it does sound like serum sickness. I had the same thing, twice. I was not diagnosed properly the first time so had Rituxan again. It usually occurs after the third treatment. Every single person here who has had Rituxan developed it in that exact time frame. As Erica said, you should not have Rituxan again. If you do, the reaction could be much worse and could lead to anaphylaxis.

It is not vital to get that last dose. Studies show that one or two infusions, and even lower dose infusions, are enough for people with ITP.

www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001823/
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12 years 8 months ago #32503 by mkreid
Replied by mkreid on topic Rituxan side effects
Thank you both for the info! Did some research on serum sickness. Not sure if that's what this is, all of my other symptoms are gone, but a sore throat and my hands and wrists are very swollen and so painful I can barely move them. But no rash or infusion site problems. If this is going to happen with the last treatment, then its definitely not worth it, esp if less than 4 can work just as well. Thanks again!

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  • 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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12 years 8 months ago - 12 years 8 months ago #32504 by Sandi
Replied by Sandi on topic Rituxan side effects
Every person does not get every symptom. I didn't have hives or redness at the infusion site until the second serum sickness reaction. The skin on my face was purple and peeling....not a pretty sight. It takes a few days to resolve. I got steroids and Morphine that time at the ER which really helped.

You definitely need to let your doctor know and make him listen. Too many people are told their reaction was 'just a virus', not true.

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  • 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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12 years 8 months ago - 12 years 8 months ago #32517 by Sandi
Replied by Sandi on topic Rituxan side effects
Oh, Meghan, I e-mailed our web guy about the posts you didn't write, and this was his response:



No, what happened was when the website was upgraded to the new website software version all of the existing website users were migrated over - but some of the users (a lot) did not keep the same User ID #. The forum software associates the posts with the user ID so some posts are now attributed to the wrong people.

- Jeff Cooper

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12 years 8 months ago #32522 by Vdeutsch85
Replied by Vdeutsch85 on topic Rituxan side effects
I had side effects during first injection. I had shortness of breath and hives. They gave me a shot of hydrocortisone which helped. I did not have any more reactions until after 3rd dose. I had fatigue and muscle aches and this continued until 2 weeks after final treatment.

I hope rituxan works for you! It did not for me.

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