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Promacta vs. Nplates weigh-in

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10 years 7 months ago #49467 by Essemess
Promacta vs. Nplates weigh-in was created by Essemess
Hi Everyone,

I'm wondering if those of you who have experience with trying Nplates and/or Promacta would weigh in regarding your experience (side effects, preference). In my family's history there are blood clots...

I have not responded to prednisone or Rituximab and am still trying to keep my spleen. Thankfully IVIG continues to boost me out of single digit counts -- but I really need a better long term plan.

Thanks for your input ... It is very appreciated!

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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10 years 7 months ago #49470 by mrsb04
Replied by mrsb04 on topic Promacta vs. Nplates weigh-in
Maybe try the Fostamatinib trial

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10 years 7 months ago #49475 by Rob16
Replied by Rob16 on topic Promacta vs. Nplates weigh-in
For many the choice is based on insurance coverage and copays: Nplate is often handled as a medical treatment while Promacta is often treated under your pharmacy plan. This can make a huge difference for you, depending on your insurance.

mrsb04, is the fostamatinib trial free?

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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10 years 7 months ago - 10 years 7 months ago #49478 by mrsb04
Replied by mrsb04 on topic Promacta vs. Nplates weigh-in
It is in the UK Rob. I would hope all trail drugs are worldwide. It seems unethical to charge someone for something unproven. Anne

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 7 months ago #49481 by Sandi
Replied by Sandi on topic Promacta vs. Nplates weigh-in
The family history of blood clots could be a problem. What is the cause, do you know? How are your counts and symptoms without treatment?

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10 years 7 months ago #49483 by Essemess
Replied by Essemess on topic Promacta vs. Nplates weigh-in
I am uncertain of the medical history behind the blood clots other than knowing there were hospitalizations, blood thinners and such. I have no one left to ask the specifics about it.

My counts without IVIG average in the low teens. Sometimes a low as 3 or as high as 28 (for the past seven months). I get about two to three weeks with IVIG... My symptoms have included petechia, purpora, severe bruising, gum bleeds, nose bleeds. Nothing too crazy that hasn't been able to be controlled. The sorts has been severe fatigue... Uncertain if it is the ITP or getting off the prednisone.

I have had to miss a lot of work for treatments -- and need some steady normalcy back. I was diagnosed with ITP during pregnancy 13 years ago -- but my platelets never dropped below 50 and then stayed in the low 100's without any treatment or intervention (or even medical follow up!) until last fall.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 7 months ago #49487 by Sandi
Replied by Sandi on topic Promacta vs. Nplates weigh-in
Were they elderly or younger? That could make a difference. Too bad you don't know more.

They both have blood clots as a side effect, so it's a coin toss. I'd ask your doctor if he has a preference.

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IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.