Immune Thrombocytopenia Purpura (ITP): What helps?

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.

I had all the test scans biopsy ect but no under lined condition so I'm confuse had a mini stroke just before christmas and have raynards and arthritis onto type but still no answers

Welcome, @merchant700. I sure hope that Doptelet works for you so you can continue traveling internationally without having to make appointments while away from home. Keep putting on those miles! 🙂

Hello Teresa, It sounds like you’ve had such a horrible year since being diagnosed with Immune Thrombocytopenia Purpura (ITP). It’s awful when you feel like this and have anxiety running the life.

ITP is a blood disease caused by the body’s immune reacting against its platelets. Sometimes the cause isn’t known but there are factors that can trigger the response to happen.
Medications, infections, typically viral infections, including chicken pox, hepatitis C, and AIDS, Covid, Epstein Bar virus can prompt antibodies that cross-react with platelets.
There are Immune disorders, such as rheumatoid arthritis and lupus
Low-grade lymphomas and leukemias may produce abnormal antibodies against platelet proteins.
https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/diagnosis-treatment/drc-20352330
You may never know the cause of your reduction in platelets. But it’s clear something is going on with your immune system to have you feeling so sick, dizzy and achy all the time.
It sounds as though you’re getting routine blood work run but have you had any other tests run to check for auto immune diseases, a bone marrow biopsy to check the health of the bone marrow…which is the blood manufacturing center of the body?
When your platelets are low, you can have excess bleeding with cuts and bruise easily. Does this happen to you? Has any medication been recommended to help slow the progression of the disease?

My lowest plate count has been 35 and my highest is 86 dont understand why I'm tired all the time fell sick dizzy and ache all the time help is there anything tha will make me feel better I just keep falling asleep no quality of life the way I feel despessed and anxious all the time please advice

I was diagnosed with itp last February and had no underlined reason for having it I'm so confused as to why I have it but it's making my life hell feel like crap all the time

I am 79 and have been living with ITP for over 15 years. Because of international travel splenectomy not recommended. No steroids because of diabetes. Promacta worked great for many years until it didn’t. Retuxin didn’t work at all and was very debilitating. IVIG with weekly Nplate shots worked great but when we travel around the US for weeks at a time we have had to make Dr appointments everywhere every weeks so now we are trying Doptelet with mixed results so far. It is VERY expensive and not covered by Medicare as Nplate was.

Yes and the platelets rose fast 4-5 days after starting treatment for it.

Yes, 4-5 days after treatment for Hpylori my husband’s platelets rose and very quickly.

Hi. Did you get treated for the hpylori? If so what was the result? Thanks.