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Anyone's child tried Cellcept?

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12 years 2 months ago #34930 by Matixsmom
Anyone's child tried Cellcept? was created by Matixsmom
Matix's Hem/Onc is deciding whether or not to start Imuran or Cellcept in August. I have asked about the Imuran before, but not the Cellcept.
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12 years 2 months ago #34956 by crystal lee
Replied by crystal lee on topic Anyone's child tried Cellcept?
Hello, I have no personal experience with this and I haven't heard of it often. I know it was mentioned a few times here but doesn't seem common. I do know a little boy on facebook (if you have facebook) is using that now. It is Beefy's battle with ITP..If you check out his page I am sure mom will give you suggestions if you can't find anything here.

Good luck <3
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12 years 2 months ago #34986 by Ann
Replied by Ann on topic Anyone's child tried Cellcept?
Have you run it past the immunologist? I'd be interested to know what he says as CellCept is a strong immunosuppressant.
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12 years 2 months ago #35001 by Matixsmom
Replied by Matixsmom on topic Anyone's child tried Cellcept?
Well, the Immunologist and Hem/Onc are working together to find the right fit. Imuran was the first choice. Now they are thinking CellCelpt because he might have CVID. If he has CVID for sure, he will need frequent IVIG infusions, which he is allergic to, so they are just going to add the CellCept to that. Just worried about side effects. There is not a good answer to any of this!!!
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12 years 2 months ago #35015 by Kjenkinsap
Replied by Kjenkinsap on topic Anyone's child tried Cellcept?
I agree! All choices suck bootie big time. I'm going to ask my son's hemo tomorrow. We are at a crossroads as well.
12 years 2 months ago #35042 by
Replied by on topic Anyone's child tried Cellcept?
Matixsmom - CVID was recently taken off the table for me, thankfully as gamma globulin [which is IVIg] was the trigger for my ITP. My IgG is low but at this stage not low enough to treat. My hematologist sent me to an allergist and lots of test were done and the verdict for now is no CVID

I sure hope your son does not have it!
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12 years 2 months ago #35048 by Kjenkinsap
Replied by Kjenkinsap on topic Anyone's child tried Cellcept?
What is cvid?
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12 years 2 months ago - 12 years 2 months ago #35055 by Ann
Replied by Ann on topic Anyone's child tried Cellcept?
CVID.. common variable immunodeficiency which means that the immune system is poor because of low antibodies. Antibodies are what are measured when looking at immunoglobulins which are divided into IgA, IgG and IgM. If the G immunoglobulins are low they can treat with IVIG or subcutaneous IG. The others, A and M can't be treated.

The good news for children is that it often gets better as they get older. The bad news for adults is that it can get worse. Oddly while the body has few antibdoies to fight infections it often manages to make antibodies against itself and ITP is the most common autoimmune disorder to accompany it.
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12 years 2 months ago #35061 by Kjenkinsap
Replied by Kjenkinsap on topic Anyone's child tried Cellcept?
Thanks for the info Ann.
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