1. < Blood Cancers & Disorders

Immune Thrombocytopenia Purpura (ITP): What helps?

Posted by naiviv @naiviv, Sep 2, 2022

Has anyone been diagnosed with ITP? Does anyone take supplements for ITP? Food to eat to increase platelets?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

lfn2124 | @lfn2124 | Mar 16 11:15am

I was diagnosesd with ITP February, 2023. Since then all the medications/protocols prescribed to stabilize my platelet level have had either been ineffective or, the more successful ones have caused unbearable side effects, greatly affecting the quality of my life. I would love to hear feedback from patients on a combination of Tavalisse, 100 mg. And Doptelet, 20 mg. Thank you.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 18 4:24pm
In reply to @lfn2124 "I was diagnosesd with ITP February, 2023. Since then all the medications/protocols prescribed to stabilize my..." + (show)
@lfn2124

I was diagnosesd with ITP February, 2023. Since then all the medications/protocols prescribed to stabilize my platelet level have had either been ineffective or, the more successful ones have caused unbearable side effects, greatly affecting the quality of my life. I would love to hear feedback from patients on a combination of Tavalisse, 100 mg. And Doptelet, 20 mg. Thank you.

Jump to this post

Hi @lfn2124, I moved your question ITP to this existing discussion so you can connect more easily with others:
- Immune Thrombocytopenia Purpura (ITP): What helps?
https://connect.mayoclinic.org/discussion/idiopathic-thrombocytopenia-prpura-itp/

Members like @endoman246 @merchant700 @agfromtheuk and others have mentioned having experience with medications like Doptelet (avatrombopag) and/or Tavalisse (fostamatinib).

LFN, have you started this protocol yet?

REPLY
1 reply
lfn2124 | @lfn2124 | Mar 18 4:38pm
In reply to @colleenyoung "Hi @lfn2124, I moved your question ITP to this existing discussion so you can connect more..." + (show)
@colleenyoung

Hi @lfn2124, I moved your question ITP to this existing discussion so you can connect more easily with others:
- Immune Thrombocytopenia Purpura (ITP): What helps?
https://connect.mayoclinic.org/discussion/idiopathic-thrombocytopenia-prpura-itp/

Members like @endoman246 @merchant700 @agfromtheuk and others have mentioned having experience with medications like Doptelet (avatrombopag) and/or Tavalisse (fostamatinib).

LFN, have you started this protocol yet?

Jump to this post

Yes, I am taking Tavalisse every other day and Doptelet daily.

REPLY
nabravo | @nabravo | Mar 19 5:50am
In reply to @jimmyb63 "Hi Oliver, have they tested her for HPylori? Treatments did not work because of Hpylori. Please..." + (show)
@jimmyb63

Hi Oliver, have they tested her for HPylori? Treatments did not work because of Hpylori. Please Google search ITP and HPylori. It takes 2 antibiotics taken together to treat it. There are two tests they can use a breath test or stool sample test. However you can’t be on anything like Prylosec or even Pepto Bismol for two weeks prior to taking the breath test or you may get a false negative. I do not know if its the same for the stool sample test. Many doctors do not know about the correlation between ITP and HPylori, please research it there is definitely a correlation. Took 3 weeks to convince a doctor to do the test. After 4 days on antibiotics platelets started to rise and very quickly.

Jump to this post

Hi Jimmy,

It took a while for receiving the information from the hospital my girlfriend stayed firstly.
They did the test but haven’t distributed the result so far. The current hospital re-tested for HPylori but both were negative.
By today they start the therapy with rituximab, hoping it helps.
Will post here all major updates.
Many thanks to you and all others for sharing your experiences with us.

-Oliver

REPLY
View MoreView Less
Please sign in or register to post a reply.