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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Profile picture for jimmyb63 @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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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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Profile picture for Lori, Volunteer Mentor @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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Profile picture for dustycat52 @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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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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Profile picture for uhealthier2024 @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
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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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Profile picture for et09 @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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What type of testing should I ask my doctor to do?

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Profile picture for uhealthier2024 @uhealthier2024

Hi, as a 4 year old child in 1965 I was diagnosed with ITP. I remember being in the hospital for weeks. I was supposed to have my spleen removed. But they started me on prednisone and my platelet levels cane up. I had no further treatment. Can it
Return as an adult? What tests should I ask my dr. To perform? I’ve had labs done, but I’m not sure if it was one that would detect a low level.

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Yes it can come back , I had it when I was achild then they gave a medication called CVP with Vitamin K and it disappeared until now at 74 years old but mild .

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Profile picture for uhealthier2024 @uhealthier2024

Hi, as a 4 year old child in 1965 I was diagnosed with ITP. I remember being in the hospital for weeks. I was supposed to have my spleen removed. But they started me on prednisone and my platelet levels cane up. I had no further treatment. Can it
Return as an adult? What tests should I ask my dr. To perform? I’ve had labs done, but I’m not sure if it was one that would detect a low level.

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Welcome to Connect @uhealthier2024. Your name caught me off guard. I thought it said ‘unhealthier’. No one wishes for that. ☺️

Immune Thrombocytopenic Purpura (ITP) is blood disorder that causes a decrease in platelets. From my understanding there are two types of ITP. Acute ITP can develop in Children who have had a viral infection. The age range is more common between 2 and 6 years. So you fit right at the age of 4. From what I’m reading on several sites, it’s usually a ‘once and done’ event, like yours.
Sometimes patients need steroids to help return the body to normal. More often, according to the articles the condition clears on its own.

Here’s a link to one of the sites, Stanford Medicine: https://www.stanfordchildrens.org/en/topic/default?id=immune-idiopathic-thrombocytopenia-purpura-90-P02315

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Chronic ITP can occur at any age. An annual physical with a CBC would let you and your doctor know if there are any potential problems with your platelet levels. If they are low, your doctor can also run a specific test for clotting times.

Are you having any unexplained bruising or symptoms?

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