Immune Thrombocytopenia Purpura (ITP): What helps?

Has anyone had success in treating ITP? It is an autoimmune disease that attacks the platelets in the blood that reduces the ability for the blood to clot. I’ve been on steroids for about 4 months, was taken off them about 3 weeks ago, and have just been put on the medication, Promacta, which was developed specifically for ITP, but my platelet count doesn’t seem to be responding.

Same thing happened to me. I was diagnosed with low risk MDS in 2017. My platelets ran 27 to 33. Meanwhile I had a serious ear infection lost hearing in that ear. Pneumonia another time and an abscess recently in my lower intestine. They tried platelet transfusions at least 4 times because I needed a hip
Replacement surgery and it did nothing to raise my platelets.
In March if this year they tried steroids. I was put on steroids 50mg for 5 days. My platelets rose to 68 right away. Then in July they were at 112 and then in August they were at 145.
My doctor said she doesn’t get it. Just 5 days on steroids and now they are at 145. I am wondering too. Do I have MDS or did I have a virus or bad infection. Who knows. I think blood diseases are more difficult to diagnose. I read where 40% of people are mistakenly diagnosed with MDS every year.

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.

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?

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.

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?

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