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TOPIC: Okay, I'm suddenly on this journey of ITP with my 30-year-old daughter

Okay, I'm suddenly on this journey of ITP with my 30-year-old daughter 1 year 2 months ago #67044

  • hoju1959@gmail.com
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Three weeks ago, Carolyn was admitted to the ER with a very low platelet count. It took us all by surprised. She had steroids and IVIG, neither of which worked. This Sunday, we start four infusions of retuximab. Feeling scared. What's next? Where is this going?

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Okay, I'm suddenly on this journey of ITP with my 30-year-old daughter 1 year 2 months ago #67050

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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Unfortunately the immune system is not well understood, even in 2019. Most folks get on either Promacta or Nplate and find life can return to normal with either of those. They're expensive but they work well for ITP.

Good luck!

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Okay, I'm suddenly on this journey of ITP with my 30-year-old daughter 1 year 2 months ago #67051

  • hoju1959@gmail.com
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Thanks for your reply! Encouragting.
How expensive is "expensive"?
- john

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Okay, I'm suddenly on this journey of ITP with my 30-year-old daughter 1 year 2 months ago #67056

  • Hal9000
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John, one can get drug prices on the website GoodRx.
www.goodrx.com/

With insurance, these drugs quickly consume the annual deductible. If one has low income/no insurance one can often find ways to get them at little to no cost.

Be aware. These drugs are 'maintenance' drugs and are taken for a lifetime to keep counts up. But surprisingly, some folks achieve spontaneous/self remission after a few months or years on them. On my efforts here. If one knows their steroid and IVIG responses, a vast majority of these folks are classified as 'row 2' in my ITP treatments table.
bottools.com/Hal/ItpTypes.html

Hope this helps.

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Okay, I'm suddenly on this journey of ITP with my 30-year-old daughter 1 year 2 months ago #67057

  • hoju1959@gmail.com
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Thanks. It just feels like the hemeotologist is throwing medicines at this. She doesn't know what's causing the ITP, but we've tried steroids, plateletes and other stuff. Now she wants us to do four doses of retuximab. I feel like she's just guessing

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Okay, I'm suddenly on this journey of ITP with my 30-year-old daughter 1 year 1 month ago #67090

  • Hal9000
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No doubt about. ITP is a rare disease. Not much money to be made in studying it.

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Okay, I'm suddenly on this journey of ITP with my 30-year-old daughter 1 year 1 month ago #67117

  • MelA
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Rituxan put my friend in remission years ago - so lets hope this will be the same for your daughter. What was your daughter's platelet count. I've had ITP since 1989 - still have my spleen (refused to have it removed) and am in a "remission" (lower than normal counts but not treating). So not everyone has to be on a treatment the rest of their life. This is new to you all, this is scary to you all - read and learn all you can, knowledge is power!

Hal should have mentioned that you probably should post this in the adult section since your daughter is an adult - you should get more responses up in that section :)
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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