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Immune Thrombocytopenia Purpura (ITP): What helps?
Blood Cancers & Disorders | Last Active: Jun 30 8:03am | Replies (208)Comment receiving replies
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.
Replies to "Hello, I'm 16 years old and i was diagnosed with ITP in September of 2024. I've..."
My daughter at age 18 was diagnosed with ITP, spent a week in the hospital receiving large doses of prednisone, tapered down over the summer before she left for college. Fast forward 4 years and in her senior year the ITP returned. She had a great doctor who allowed her to continue playing her beloved lacrosse if her counts were above a certain number. A few years later she was finally diagnosed with Lupus among a few other autoimmune disorders but the damage was already done to her kidneys. The ITP resolved itself but she's been treated for over twenty years for the Lupus and the other autoimmunes, leads an active life with a positive attitude, works full time and eats VERY healthy. So, keep up your search for answers and press your doctor's to find out WHAT is really wrong. YOU know YOU better than anyone else. Sending healing thoughts your way!
My doctors are treating me with NPLATE injections which seem to help some. I hope this helps you.
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@augustmarie09, you've been dealing with a lot for so long at such a young age. It sounds like you have had a good team of doctors. Have you and your family considered getting a second opinion?
You've probably already seen this web information about ITP in teens, but just in case:
- Teenage ITP https://itpsupport.org.uk/itp-in-teenagers/
Splenectomy is a major surgical procedure and carries a long term risk of severe infection and blood clots. So I can understand why you, your family and your doctors are weighing the options carefully. The webpage above also mentions alternative treatments such as rituximab or the newer TPO-mimetics like Eltrombopag and Nplate as possible treatments. Have those been discussed?