Immune Thrombocytopenia Purpura (ITP): What helps?

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

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.

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?

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.

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.

Also… my spleen and all organs are excellent according to ultrasound.

They only put me on a 1/2 doseage of the steroids.
I am on pins an needles!
Can you please keep me posted how your husband is doing !? I would really appreciate it. Will keep you both in our prayers

When he started treatments, it was at 15. They did an ultrasound of the spleen and no issue. Did a bone marrow biopsy and nothing. Started him on prednisone and it did nothing. The next step was 2 days of infusions of platelets (it was a drug to increase production but the name is skipping my ming) that brought him up to 160 on a Saturday (after his final infusion on Friday) but was at 30 by Wednesday. He then started the Rutiximab and he got his first infusion and then they went to injection. At day 10 from the infusion, he lost his vision, had the worst body aches and was not ok. Went to the hematologist and they checked him, and his levels were good, said they didn't think it was the drug as this wasn't normal side effects. We went home and he slept for roughly 3 hours and got up and said he needed to go back in. We went to the ER and sat there FOREVER, once they got him in, he was being tested for everything under the sun with everything coming back negative. They settled on it being a very rare side effect of the Rutiximab. They stopped that immediately and wanted to do a splenectomy and we pushed back asking why since in May his spleen wasn't enlarged. Asked what the steps after the splenectomy if it didn't work. They stated Promacta so we asked if we could go to that first. They were agreeable so we started that. They also put him on a high dosage of a steroid as his platelets were around a 10. He was on Promacta 50mg and high dose steroids for 3 weeks and his platelets were great, we thought yes, this is the answer. Once he started to wean off the steroids (4 days before his blood test) his platelets dropped to a 20. That was on Dec 11th, and we have not heard anything back on the increased dosage at this time. My husband is to be calling the doctor asking about the increased dosage, but he is a man! 🙂 (I do give him a little leeway as he is a self-employed contractor, and we have so many projects on the books that I know he is super busy all while being a great husband and father!)