Immune Thrombocytopenia Purpura (ITP): What helps?

I found a hematologist that was very knowledgeable on Von Willebrand disease!

The normal Von Willebrand panel I wouldn’t test positive for due to having my spleen removed so, these were the blood test he did>
•Chromogenic Factor VIII Activity Assay, Plasma
•Von Willebrand Factor Activity, P
•Von Willebrand Factor Ag, P

I have been dealing with an ITP diagnosis for 1 1/2 years….platelets on a seesaw the whole time. Can you tell me how they finally diagnosed Von Willebrand for you?

I had ITP about 15 years ago and unfortunately for myself after 6 months of every treatment possible my platelets couldn’t rebound. I ended up having to have my spleen removed. After the removal I have been fine. I did find out that I have a genetic bleeding disorder Von Willebrand after the ITP.

Good Afternoon,
I am living with MDS and ITP. So far the treatment has been NPLATE whick brought my platelet count from 14K to as high as 68K. Hope this is of some help. I am new to this as I was diagnosed in June of 2025.

My husband was diagnosed with ITP around 2019. He said he remembers back in the early 2000’s one of his Endocrinologist noticed his platelets were just a bit lower. Never looked at it or was at any concern, yet. Well we came to the conclusion that it was Rosuvastatin that caused the ITP. He stopped taking it but had to get back on it. Anyway, he’s been trying to avoid a splenectomy because he has other conditions that we are afraid it’ll affect it. I’m glad I got to read your story and positive feedback on the splenectomy. Hope you’re doing well. Blessings.

Hello,
I'm 16 years old and i was diagnosed with ITP in September of 2024. I've had to be taken by ambulance to seattle childrens hospital more than one because i've fallen into critical condition numerous times. My team of doctors have tried every medication including, promacta, doptelet, IVIG, different hormones, and birth control. None of which has seemed to control the bleeding for more than a month. Normally in most cases ITP is curable, but unfortunately my doctors said that i had, had it for so long before being diagnosed and treated that my condition is probably chronic. My family and i are still looking into treatment options such as a splenectomy or having my uterus removed but as of right now we are at a loss. If anyone has any other medications or treatment options that i haven't listed please reach out.
Thank you.

Good morning,
I decided to find a support group or some way I could find more information about the condition ITP my ten-year-old child was diagnosed with at the beginning of the summer back in June. So far, her platelet count has been at its highest at a 22 after an infusion, but the last two blood draws she is at a 2. The last blood draw at a 2 was after steroids and we have started her on the medication Promacta. I am worried about the lack of positive response to medications and the progression of this condition for her. She is worried to be at school and the meds have been a struggle. Asking for advice and I would like to get insight on living with the diagnosis on a daily for those of you experiencing ITP. Thank you!

hello; i am also on promacta; 100mg a day. my count stays around 30-40 plus 5mg of Prednisone daily i have been on this for at least 2 years now with no help in site. i do not want to take out my spleen since this is no guarantee. has anyone else tried something else; i have tried every other medication like promacta plus infusions

I was diagnosed in April 2024....taking Promacta, its was working for 6 month, but in November my platelets are slowly going down....and I still taking the medicine.
Couldn't find anyone who have a experience with that, i mean Patient