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TOPIC: Rituximab

Rituximab 6 years 3 months ago #42617

  • acook
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My son has was diagnosed in May. The IVIG is not working anymore and neither are the steroids. The doctors want to try a drug called Rituximab. I am leery. Had anybody had experience with this drug?

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Rituximab 6 years 3 months ago #42619

  • alisonp
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For my son it was an easy but ineffective treatment. Saying that though, he seems to have stayed mainly in the 20-30 zone since he had it, whereas before, his count was normally 10-15. So maybe it worked a bit.
Are you in the UK? I ask because Drs are more conservative with treatment over here, so if they are suggesting it, they probably think he needs to try something to keep him safe.

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Rituximab 6 years 3 months ago #42623

  • 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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How old is he and what are his counts and symptoms?

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Rituximab 6 years 3 months ago #42625

  • eklein
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If you search the discussion board, you will find lots of experience with Rituxan. Many had remissions, many had no effect, a few had possible slight increases, and some had serious non-fatal reactions.
I had a remission.
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
The following user(s) said Thank You: acook

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Rituximab 6 years 3 months ago #42628

  • acook
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I am in the United States. He's counts two weeks ago were at 1000. He had an IVIG and brought them back up to 16,000. They feel it is not effective anymore and want to try this drug. He is very active in sports and right not he is benched. :(

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Rituximab 6 years 3 months ago #42632

  • eklein
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It sounds like your son is young. You should post your question on the parents folder, some parents may only monitor that folder. Sandi, maybe you could move this over there?
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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Rituximab 6 years 3 months ago #42634

  • acook
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He is 10.

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Rituximab 6 years 3 months ago #42647

  • 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
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2355
Moved. ;)

It's hard to know when to use a treatment like Rituxan. You have to weigh the benefits vs risks and also consider quality of life. Rituxan has given many people remissions but it is also a heavy duty treatment that should not be taken lightly. Most of the listed side effects are very, very rare though and mostly affect people who are immunocompromsied or those who have other health issues.

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