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Rituximab

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14 years 10 months ago #10275 by AlaskaCat
Rituximab was created by AlaskaCat
Hi everyone :)
My son is going into his 4th month with ITP. It's been a rollercoaster ride, as I am sure most of you are familiar with. He has had 2 IVIG treatments: the first one worked, the second one did not. Now we are looking at the Rituximab infusions. If anyone out there has had this treatment, or knows more about it besides just side effects: such as, benefits vs risks, I would appreciate any feedback you can offer.
He is 18 years old and the Docs all say he is cronic (if this helps)
Thanks in advance!
Jackie
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14 years 10 months ago #10284 by CindyL
Replied by CindyL on topic Re:Rituximab
Hi Jackie,

I was diagnosed back in 2004 and just did the Rituxan treatment this past Sept./Oct. It wasn't available to me before then. So far, my counts are rising and I'm sitting at 366k, a count I haven't seen in years. I didn't have any side effects but that could be because I was given Decadron 24 hours before and some Decadron and Benadryl on the day of treatment. One thing to remember, we are all different. What works for me might not work for your son and vice versa.

I'm sure you'll get lots of replies, so read then all. Good luck to your son!
  • 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 10 months ago #10289 by Sandi
Replied by Sandi on topic Re:Rituximab
Jackie:

The benefits can be worth the risk for a lot of people. I'm on my sixth year of remission, although I can't completely credit Rituxan for that since there is no logical reason for it to last that long. When it works, it can cause about a year of remission on average.

The main risks are side effects during the infusion, which are usually easily controlled with pre-meds. Side effects after the infusion are rare, but they include feeling flu-like for a day or so, serum sickness (which can be a bit more serious, I've had it twice), and PML (which can be very serious and is extremely rare).

My question is though, has he tried anything other than IVIG? No steroids?
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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