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Immune Thrombocytopenia Purpura (ITP): What helps?

Blood Cancers & Disorders | Last Active: Nov 8 4:14pm | Replies (166)
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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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Replies to "They have not yet used IVGG yet just the IVIG (Immune Globulin). I will ask about..."
Colleen Young, Connect Director | @colleenyoung | Sep 3, 2022

Here's information about requesting an appointment at Mayo Clinic if that is an option for you: http://mayocl.in/1mtmR63

I sure hope you get answers and soon.

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ggloss | @ggloss | Jan 6, 2023

Hello,
I had acute ITP one year ago, was hospitalized with a platelet count of 3000 (3). Initially nothing worked. My platelet count dropped to 1000 (1). I don't know where you are located but I had an amazing hematologist in Appleton, WI, Dr Kathleen Hemauer. ( She is moving to the Milwaukee area in the near future).
IVIG, Dexamethasone, platelet transfusions did nothing. Initially N Plate didn't seem to be working either but eventually had a positive affect. I left the hospital on 80mg of prednisone with a platelet count of 12000 (12). Within about 4 weeks my platelet count was normal and I was off the prednisone in 60 days.
Dr. Hemauer is an intelligent, compassionate and dedicated doctor. I had a positive outcome and I credit her for that.
Best of luck to you, I hope you find the same quality of care that I was fortunate to have.

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donnasouthwick | @donnasouthwick | Oct 26, 2023

Hi, I’m Donna. My son was also a patient who didn’t respond to IVIG infusions; the most we ever got was about a week, then back we’d go. He got ITP at 12, spent the better part of a year in the ped’s hemoc dept. After a year they finally removed his spleen. He was on prophylactic antibiotics for several years, and then one day just said he didn’t want to do that any more. That was 30 years ago, he was also a very odd case, but all this time later, he is a happy, healthy, guy with other issues (we both have EDS, as did my mom, gram, and great gram), but the ITP has been considered “in remission” permanently.

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nabravo | @nabravo | Mar 8 1:49am

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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