Immune Thrombocytopenia Purpura (ITP): What helps?

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.

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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?

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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.

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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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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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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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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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