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DiscussionImmune Thrombocytopenia Purpura (ITP): What helps?
Blood Cancers & Disorders | Last Active: Nov 8 4:14pm | Replies (166)Comment receiving replies
Replies to "Just diagnosed with ITP, platelets ranging from 2000-5000. So far IGIV, steroids and Rituxan has not..."
Went through this after having my daughter.
Bone marrow ruled out cancers, went on high doses of steroids for months, couldn't ween off, platelets would drop severely. I was hitting 10k and lower. Couldn't scratch an itch without busting capillaries and I looked like someone beat me with softballs and nose bleeds were terrifying.
After 8 months, they took my spleen out, and the ITP REVERSED. 27 yrs later, still no bleeding issues
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.
Jimmy, it can take a while for steroids or Rituxan to work, generally 3 weeks or so. Did you see any improvement with intravenous gamma globulin (IVGG)? It tends to show improvement sooner, within 48 hours.
Do you know the underlying cause for your ITP, for example infection or an autoimmune condition, new medication interaction?