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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What type of testing should I ask my doctor to do?

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@et09

I was taking Promacta which was slowly bringing platelets up but doc took me off because my liver numbers were very elevated. I just started taking Doptelet yesterday so have nothing to report as far as how it’s working.

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Just wanted to share that I started Doptelet and
In five days my platelets went from 30 something up to 61 (thousand) and my liver numbers are going down. There are side affects that I am experiencing and hope I can live with them and overcome them!

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@uhealthier2024

What type of testing should I ask my doctor to do?

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Hi @uhealthier2024, You sound very concerned that you may have ITP again. Your experience with acute ITP as a child 50+ years ago, was likely after a viral infection. From the articles I posted for you in my previous reply, it is usually a once and done event. So that occurrence is long past. That would be a matter of “Looking for trouble where there isn’t any.” ☺️

However, ITP can occur at any age. Here are some worthwhile articles to read which may help you identify if you are having any symptoms of a newly developed condition.
https://www.healthline.com/health/idiopathic-thrombocytopenic-purpura-itp
~~
https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/symptoms-causes/syc-20352325
You’re wondering what tests would be necessary to check for ITP. Your doctor would most likely order a complete blood count (CBC), electrolyte levels, liver and kidney function, platelet antibodies. This would give a good overall picture of the health of your blood and liver, kidney functions. The lab results would be good indications of your overall health.

These would be some of the symptoms of ITP:
easy bruising, even if you don’t remember bumping something.
pinpoint-sized petechiae, or reddish-purple dots that almost look like a rash on your skin, usually on your lower legs.
spontaneous nosebleeds.
gum bleeding.
cuts that take a long time to stop bleeding or scab over.
blood in the urine.
blood in the stool.

Do you have any unexplained bruising?

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My 7 ear old grandson was just diagnosed with ITP last week. He’s been on steroids but his numbers have gone down. Who’d like to find out more info about it.

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@dustycat52

My 7 ear old grandson was just diagnosed with ITP last week. He’s been on steroids but his numbers have gone down. Who’d like to find out more info about it.

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Hi @dustycat52. Your little grandson was diagnosed with immune thrombocytopenic purpura or ITP. It’s a condition where there is a decrease in platelets. When it happens in children, it most often follows a viral infection and is generally a once and done. It can disappear on its own without treatment but steroids is a common medication to get the body back on track.

There are quite a few good articles online. This one from Stanford Medicine is appropriate for your grandson’s age group.
https://www.healthline.com/health/idiopathic-thrombocytopenic-purpura-itp
Do you know if your grandson recently had a viral infection such as the flu, covid, RSV or chickenpox?

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@loribmt

Hi @dustycat52. Your little grandson was diagnosed with immune thrombocytopenic purpura or ITP. It’s a condition where there is a decrease in platelets. When it happens in children, it most often follows a viral infection and is generally a once and done. It can disappear on its own without treatment but steroids is a common medication to get the body back on track.

There are quite a few good articles online. This one from Stanford Medicine is appropriate for your grandson’s age group.
https://www.healthline.com/health/idiopathic-thrombocytopenic-purpura-itp
Do you know if your grandson recently had a viral infection such as the flu, covid, RSV or chickenpox?

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I know he had some type of virus but I don’t now what. He’s had RSV a few times in the past.My son isn’t very forthcoming with details. Thanks for the article. I’ll read it and then send it on
to my son.

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I was diagnosed with ITP several years ago. My platelet count has just dipped below 40000 and in the last year as moved from 39 to 44 and back to 39.. Is CoQ10 a safe supplement to take in my circumstances? I currently take 100mcg of levothyroxine and avorstatin daily. And how does platelet size effect platelet count?

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@jimmyb63

They have not yet used IVGG yet just the IVIG (Immune Globulin). I will ask about the IVGG. They are still stating ITP and have ruled out many things. The bone marrow tested was negative for everything. They have run so many blood tests too many to list. The only thing they said was I may develop RA but no symptoms. There have been no new medications. I did ask about amlodipine which they took me off of and put me on lisiniprol. The doctor said even if it was medication related they would drop but not down to 2000. They are going to try NPLate today if they can find some, from another hospital here in town. She also put me on Dapsone. They said they have only ever had one case like mine that didn’t respond to one of the first 3 treatments. This is the reason I’m seeking a doctor/hospital that has dealt with my situation before.

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Hello @jimmyb63,

I'm new to this board and I'm highly interested in your story. How are you doing today, hope you have overcome it and all is good.
My girlfriend is now in hospital since ~ 7weeks. Similar case like you. None of the treatments result in increasing platelets. They started two weeks ago with NPLate and increased the dose now to maximum, but no improvements. Platelets still down on 1000, in add, they immaturity platelets disappeared too.
With all the tests ( bone marrow puncture, endless blood tests, ...) they found out mastocytosis but shouldn't have any correlation to ITP they stated.

Maybe you can share your experiences.

Many thanks in advance,
Oliver

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@nabravo

Hello @jimmyb63,

I'm new to this board and I'm highly interested in your story. How are you doing today, hope you have overcome it and all is good.
My girlfriend is now in hospital since ~ 7weeks. Similar case like you. None of the treatments result in increasing platelets. They started two weeks ago with NPLate and increased the dose now to maximum, but no improvements. Platelets still down on 1000, in add, they immaturity platelets disappeared too.
With all the tests ( bone marrow puncture, endless blood tests, ...) they found out mastocytosis but shouldn't have any correlation to ITP they stated.

Maybe you can share your experiences.

Many thanks in advance,
Oliver

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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.

REPLY
@loribmt

Hi @uhealthier2024, You sound very concerned that you may have ITP again. Your experience with acute ITP as a child 50+ years ago, was likely after a viral infection. From the articles I posted for you in my previous reply, it is usually a once and done event. So that occurrence is long past. That would be a matter of “Looking for trouble where there isn’t any.” ☺️

However, ITP can occur at any age. Here are some worthwhile articles to read which may help you identify if you are having any symptoms of a newly developed condition.
https://www.healthline.com/health/idiopathic-thrombocytopenic-purpura-itp
~~
https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/symptoms-causes/syc-20352325
You’re wondering what tests would be necessary to check for ITP. Your doctor would most likely order a complete blood count (CBC), electrolyte levels, liver and kidney function, platelet antibodies. This would give a good overall picture of the health of your blood and liver, kidney functions. The lab results would be good indications of your overall health.

These would be some of the symptoms of ITP:
easy bruising, even if you don’t remember bumping something.
pinpoint-sized petechiae, or reddish-purple dots that almost look like a rash on your skin, usually on your lower legs.
spontaneous nosebleeds.
gum bleeding.
cuts that take a long time to stop bleeding or scab over.
blood in the urine.
blood in the stool.

Do you have any unexplained bruising?

Jump to this post

Thank you for helpful information. I get the purple rash bruises but only on my arms. I dont get on my legs
If any I formation on this I'd greatly appreciate. Have a blessed day.

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