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?

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melody12 | @melody12 | Dec 30, 2022
In reply to @colleenyoung "Welcome, @cathy07. Have you only recently been diagnosed with ITP? How are you doing?" + (show)
@colleenyoung

Welcome, @cathy07. Have you only recently been diagnosed with ITP? How are you doing?

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I was diagnosed in 1991 and put on steroids. WBC count continued to drop and in 1992 I had a splenectomy. My WBC’s are now a little elevated (6-700,…), which is now my new “norm” and have no issues to speak of.

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1 reply
cathy07 | @cathy07 | Jan 1, 2023
In reply to @melody12 "I was diagnosed in 1991 and put on steroids. WBC count continued to drop and in..." + (show)
@melody12

I was diagnosed in 1991 and put on steroids. WBC count continued to drop and in 1992 I had a splenectomy. My WBC’s are now a little elevated (6-700,…), which is now my new “norm” and have no issues to speak of.

Jump to this post

Thank you for moving me.
In my research at Mayoclinic.com, I found information about Helicobacter pylori.
Has anyone here had a positive test for this bacteria.

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1 reply
cathy07 | @cathy07 | Jan 1, 2023
In reply to @colleenyoung "Welcome, @cathy07. Have you only recently been diagnosed with ITP? How are you doing?" + (show)
@colleenyoung

Welcome, @cathy07. Have you only recently been diagnosed with ITP? How are you doing?

Jump to this post

I was diagnosed with ITP about mid 2021. I have taken several different treatments without much luck.
I have a great doctor and a supportive care team.
Just doing some research on my next move.
Thanks for helping me move around in this group.
It will be nice to not feel so alone.
Happy New Year

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1 reply
cathy07 | @cathy07 | Jan 1, 2023
In reply to @cathy07 "I was diagnosed with ITP about mid 2021. I have taken several different treatments without much..." + (show)
@cathy07

I was diagnosed with ITP about mid 2021. I have taken several different treatments without much luck.
I have a great doctor and a supportive care team.
Just doing some research on my next move.
Thanks for helping me move around in this group.
It will be nice to not feel so alone.
Happy New Year

Jump to this post

I was diagnosed in mid 2020.
Not sure if I can edit the last reply.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 1, 2023
In reply to @cathy07 "I was diagnosed in mid 2020. Not sure if I can edit the last reply." + (show)
@cathy07

I was diagnosed in mid 2020.
Not sure if I can edit the last reply.

Jump to this post

Cathy, there are a couple of ways to edit our replies. I often spot typos or things I want to change.
There is a 30 minute window where you can edit yourself. At the bottom right side of your comment there are 3 dots …

Click there and a menu drops down where you can Copy, link, Report Comment and for 30 minutes you’ll see Edit! Click edit and go ahead and make the correction.

After 30 minutes click the same 3 dots … and click on Report. That will take you to a moderator who will be happy to change whatever you need. They can delete comments, correct spelling or edit whatever you need. All you have to do is ask. ☺️

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cathy07 | @cathy07 | Jan 1, 2023
In reply to @jimmyb63 "Thank you so much for your response and information. It helps to hear from someone who..." + (show)
@jimmyb63

Thank you so much for your response and information. It helps to hear from someone who has been on this same journey. They did mention a possible splenectomy if these treatments do not work. However I will need a heart valve replaced in the future, so I’m hoping I can keep the spleen at least until after that. They also diagnosed me we Hpylori which I’ve read can cause your platelets not to increase until it’s eradicated.

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Hi. Did you get treated for the hpylori? If so what was the result? Thanks.

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1 reply
jimmyb63 | @jimmyb63 | Jan 1, 2023
In reply to @cathy07 "Thank you for moving me. In my research at Mayoclinic.com, I found information about Helicobacter pylori...." + (show)
@cathy07

Thank you for moving me.
In my research at Mayoclinic.com, I found information about Helicobacter pylori.
Has anyone here had a positive test for this bacteria.

Jump to this post

Yes, 4-5 days after treatment for Hpylori my husband’s platelets rose and very quickly.

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jimmyb63 | @jimmyb63 | Jan 1, 2023
In reply to @cathy07 "Hi. Did you get treated for the hpylori? If so what was the result? Thanks." + (show)
@cathy07

Hi. Did you get treated for the hpylori? If so what was the result? Thanks.

Jump to this post

Yes and the platelets rose fast 4-5 days after starting treatment for it.

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merchant700 | @merchant700 | Jan 3, 2023
In reply to @colleenyoung "Hi @hoytm40, Fellow ITP members like @rojo36 @hi2l @mjpm2406 @melody12 may also join in to share..." + (show)
@colleenyoung

Hi @hoytm40,
Fellow ITP members like @rojo36 @hi2l @mjpm2406 @melody12 may also join in to share their experiences.

Immune thrombocytopenia (ITP) used to be called "Formerly known as idiopathic thrombocytopenic purpura". Immune thrombocytopenia is a disorder that can lead to easy or excessive bruising and bleeding. The bleeding results from unusually low levels of platelets — the cells that help blood clot.This disease is caused by an immune reaction against one's own platelets.

Naviv, you asked about foods and supplements that might help increase your platelets. Here's an article that might interest you.
- How to Naturally Increase Your Platelet Count https://www.healthline.com/health/how-to-increase-platelet-count

Eating certain foods and taking supplements may help to increase your platelet count. Your care team can help make the right recommendations for you. Be sure to tell your doctor about any ongoing thrombocytopenia symptoms. If you have a very low platelet count, you may need medical treatment to avoid serious complications.

@hoytm40 and @naiviv do either of you have pre-existing autoimmune conditions?

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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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2 replies
teresa1holland | @teresa1holland | Jan 4, 2023

I was diagnosed with itp last February and had no underlined reason for having it I'm so confused as to why I have it but it's making my life hell feel like crap all the time

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