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Cellcept info please!!!

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9 years 1 month ago #47283 by JCHCW23
Cellcept info please!!! was created by JCHCW23
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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  • 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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9 years 1 month ago #47286 by Sandi
Replied by Sandi on topic Cellcept info please!!!
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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9 years 1 month ago #47287 by JCHCW23
Replied by JCHCW23 on topic Cellcept info please!!!
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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  • 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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9 years 1 month ago #47292 by Sandi
Replied by Sandi on topic Cellcept info please!!!
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.
The following user(s) said Thank You: JCHCW23

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