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Treatment Suggestions Doc's Can't Seem To Find One That Works

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3 years 6 months ago #69874 by Littleteenie
Hello,
I am new to the group my mom has been diagnosed with Thrombocytopenia due to Platelet Alloimmunization and for 5 months now we have been trying to find a treatment option that works. It's getting so frustrating because nothing seems to work helps for a bit then they drop again. She is currently getting NPlate injections and is on a steroid. The steroid is the only thing that brings it up but she has been on them for 4 months now and the side effects are worse then the Thrombocytopenia it's self. She has had Rituximab as well. Any thoughts or suggestions I can bring up to her doctor would be appreciated. I am still trying to find my way and get educated on this to best help my mom. She is 76 years old and is also just finishing up a colon cancer diagnosis however we were lucky with that as she had surgery and needed no further treatment.
Thanks
Tenna

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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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3 years 6 months ago #69877 by midwest6708
Hello. Sorry you have had the need to find your way here.
One of the best ways to educate yourself is to read everything there is under this site's Patient & Caregivers tab. Its advice is clear and accurate, plus it outlines all the options.

I understand the problem with steroids completely. Too many of ITP's treatments are worse than the disease. As for NPlate, I currently use it. It works for me, but not as consistently as I'd prefer. Still... I much rather put up with it over long-term prednisone.

As for NPlate and your mom, I suggest that the dose might not yet be spot on. The maximum dose for the drug is 10 mcgs/kilogram of body weight. Has your mother reached the max yet? The other suggestion I have is to make sure her doctor understands that NPlate is NOT meant to put the platelet count into normal range. That, in fact, can be dangerous. The ideal count with the drug is only 50. So ask her doctor about his platelet goal as well as where her dosage is at the moment.

I hope this has been useful. Wishing your mother and you the best.

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