Immune Thrombocytopenia Purpura (ITP): What helps?

Has anyone with ITP tried a type of TPO agonist medication? And if so what was your experience like? Was it helpful? Any side effects?

I believe members like @vishu1009 @leilab1 @yrag @agfromtheuk @genohappydays can share their experiences with thrombopoietin receptor agonists (TPO-RAs) such as eltrombopag (Promacta), romiplostim (Nplate) and/or avatrombopag (Doptelet).

Emma, have you started taking a TPO?

I have not yet, but will be starting Promacta next week.

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.

Hi Emma,
The name Eltrombobag fills me with dread...My Husband was put on this four years ago, the first weekend he was on it, he had a stroke, but he did have un-diagnosed high blood pressure.
He continued to take it (altered strength) for a few years it was fine and then his levels began to drop so was put onto avatrombog, he finds it very difficult to get any for of stability with this med, he still takes it, but weekly blood test and ranges from 1 to 500 within one week isn't ideal.
His Specialist is going to try the Ref????(forgot the name) infusion in the coming months, so fingers crossed.

I just tried a drug Tavalise that blocks spleen receptors that destroy platelets. It did not work with platelets dropping 30 points each week. Anybody tried otc stem cell stimulation

Welcome to Connect, @endoman246. If you’re having an over production of platelets, your hematologist would be the best person to consult about the next step to take if the Tavalisse hasn’t worked as expected. Taking any over the counter supplements can be pretty iffy as they can cause side effects, drug interactions and other issues.

Were you diagnosed with Essential thrombycythemia? How long were you taking the Tavalisse? Has your doctor discussed other options with you?

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.

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?

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 .