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TOPIC: Cellcept info please!!!

Cellcept info please!!! 4 years 10 months ago #47283

  • JCHCW23
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Hello! My 10 year old son was diagnosed with ITP 3 months ago when we noticed strange dark bruises on his body. He has had 3 WinRho treatments which only held his platelets for 10-12 days before being admitted again. He has had 2 IVIG treatments which have lasted longer than the WinRho. He had his latest IVIG yesterday and the dr wants to put him on CellCept since his levels are not staying up for long. Has anyone else or anyones kids been on CellCept? I see it is used for anti-rejection for transplants so the possible side effects make a little nervous! Any info would be greatly appreciated!!!

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Cellcept info please!!! 4 years 10 months ago #47286

  • 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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I would get a second opinion before using CellCept on a child. It's not done often. How are his symptoms when counts are low?

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Cellcept info please!!! 4 years 10 months ago #47287

  • JCHCW23
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I am thinking the same thing!! He gets brusises with hematomas, petechia, very pale...he is a very active boy who plays every sport so when his platelets are low-he is miserable because he can't play sports!! He has had a bone marrow biopsy and numerous other tests-thankfully everything is coming back negative but it is so frustrating!!

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Cellcept info please!!! 4 years 10 months ago #47292

  • 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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  • Karma: 11
  • Thank you received: 2342
Yes, ITP can be frustrating. It's tough to balance allowing him to have a normal life without over-treating. Long-term side effects can be scary.
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