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Immune Thrombocytopenia Purpura (ITP): What helps?

Blood Cancers & Disorders | Last Active: 1 day ago | Replies (174)
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@merchant700

I am 79 and have been living with ITP for over 15 years. Because of international travel splenectomy not recommended. No steroids because of diabetes. Promacta worked great for many years until it didn’t. Retuxin didn’t work at all and was very debilitating. IVIG with weekly Nplate shots worked great but when we travel around the US for weeks at a time we have had to make Dr appointments everywhere every weeks so now we are trying Doptelet with mixed results so far. It is VERY expensive and not covered by Medicare as Nplate was.

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Replies to "I am 79 and have been living with ITP for over 15 years. Because of international..."
Colleen Young, Connect Director | @colleenyoung | Jan 4, 2023

Welcome, @merchant700. I sure hope that Doptelet works for you so you can continue traveling internationally without having to make appointments while away from home. Keep putting on those miles! 🙂

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agfromtheuk | @agfromtheuk | Sep 18, 2023

Hi @Merhant700,
I have just read your post, my Husband Alex also has ITP, with no reason! He has had it for three years, he is on Avatrombobag 20mg, and I find these so erratic, we still have not found a dose that keeps Alex within a stable range, this has been going on since June. (three Platelet transfusions later) still erratic readings, can I ask how you found getting to a stable level with this medicine. Many Thanks
Jan Green

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