Immune Thrombocytopenia Purpura (ITP): What helps?

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.

I was diagnosed with ITP nearly 50 years ago. My platelet count when it started was barely 2k. I was in my senior year of highschool and on gymnastics team. The day I was diagnosed I had completed 100 continuous backflips on trampoline, so I was feeling no symptoms. The only symptom that took me to Emergency room that day was rash on my forearm (peteichiae), my mom insisted I get checked out. I landed in Mott's Children's hospital Ann Arbor inpatient over 40 days as they wouldn't release me until platelet count was 40k or better. I was put on high dose Prednisone and Cytoxan. At that time I was told all my symptoms were leukemia but it was not. I had several platelet transfusions, bone marrow aspiration and all pointed to unknown cause (idiopathic). After 4 years of medication high dose Prednisone and Cytoxan hardly any change in counts 60k at best, gained 50 lbs from Prednisone on salt restricted diet and started to effect me without stomach ulcers. Suggestion for spleen removeal, said may cure 50% chance. Had splenectomy 1979. My platelet count within a couple months went to 800K and then leveled to 400K after a few more months. I had no more issues until later in life. I'm now finding the long term medications have taken their toll on my bones and possibly blood clotting. For about the last 15 years platelets have been normal range 250k-350k I have also had a few broken bones in feet and due to accident currently have broken Fibula and Superficial Thombus in a deep calf vein caused by wearing a medical boot. I have been to a few different Hematologists over the years, one told me I'm lucky 1 in 200k to have Platelets in normal range, literally told me go home don't have to worry. Well I get phlebitis in my hands often and last 3 years have had some in feet, until this broken Fibula now more serious in deep vein calf. My platelets still in normal 198k. I have taken a 81mg asprin for about 12 years and it helps me. Also when I received my 2nd COVID vaccine (Moderma) within 10 minutes I got a quarter size blood clot in my wrist. A week later ultrasound confirmed it although by then it was size of a dime.
Reason for my long story, if I had known the long term damage the meds were doing I wouldn't have waited so long to have spleen removeal.
Good luck to you and do seek a second opinion if not being taken care seriously.

Hi Linda, I'm sorry to hear that your head is killing you with your platelets below 30, but that treatment won't start until you're 20 or lower. I'm tagging fellow members like @georgie2 @jimmyb63 @ggloss @dorisj08 @teresa1holland @merchant700 @naiviv to offer their tips.

How are you doing today? Any updates?

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.

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

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