... tried Prednisone. None of this worked. She has been on Mestinon since diagnosis. The only thing that has helped is IVIG treatments every 6 weeks. Now they are considering changing her medicine to Cellcept. Has anyone used it for this and how do you like it?
Please remember the answer I give is from my personal perspectives. Our bodies react differently to every medication. That's the key thing to remember.
I'm sorry Mestinon didn't help your daughter.
It's good that she had the thymectomy. One less thing to worry about.
My words about CellCept don't paint a nice picture. After years on Mestinon I too was prescribed CellCept. This drug is designed to tear down your immune system which increases chances for illnesses and infection and has been linked to cancers.
After I began CellCept, I became weaker each day. To the point I didn't know when one day ended and another began, I became so weak that I never left the bed, unless my husband walked me to the bathroom. I never talked, watch TV, read a book, nothing. Unable to hold my head up and everything hurt my body. After 10 days of a perpetual decline my husband threw the pills away. His version is that he was "watching his wife die in front of his eyes".
That's my personal story, but others will respond with positive responses while using the drug. That is why it's important to remember each MG patient reacts differently.
My suggestion would be to read everything you can find on CellCept, then make your best informed decision.
I do wish you the best. It's hard to navigate this minefield.
One question: Has she tried plasmapheresis?
My best to your family -
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