Immune Thrombocytopenia Purpura (ITP): What helps?

I pray your treatment thus far finally kicks in. I know ITP is a very frightening illness & makes you wonder if there’s a light at the end of the tunnel. I’ve had 4 relapses since the age of 33, over many years. Lowest count was 2K, also 4K, 12K. I’ve always had high dose prednisone which was AWFUL. Once I had IV Solumedrol, then Pred. And last time in ‘08, had IVIG, then Pred; followed by kidney CKD; so I won’t take that again. I think my treatments were old-school. There must be newer advances by now & I just hope someone can help you. There’s an online support group, “PDSA”, which has newer info. Good luck! 🍀

Hello all! Im a 35 y/o female who was diagnosed with ITP in March of 2020. My hematologist started me on prednisone which helped keep my platelets at a safe level but due to side effects I was weened off. After a year he started recommending a splenectomy but wanted to try rituxan first. 1st and 2nd does of rituxan raised my platelets to safe levels but plummeted to a 4 the 3rd week of treatment. After a consultation I opted to get splenectomy. It’s now been 3 weeks since splenectomy, the day after splenectomy my platelets were at 90k (highest it had been since diagnosis) and 2 weeks later 57k. I have gone for blood work every week but stopped keeping track of numbers as I am scheduled to see my hematologist on Friday. I’m worried that my splenectomy was not a success. Any suggestions, comments? This has been a traumatic experience for me as my friends and family are supportive but not educated with my diagnosis.

Hi @kshizzle1304, welcome. Has the Promacta helped you? What symptoms of ITP do you find challenging?

I was just diagnosed with Chronic ITP recently at 18. I’ve been struggling with acute ITP since the winter of last year. Since I’m around the year mark, my hematologist seems to think that I now have chronic ITP. My hematologist also has put me on Promacta starting at 75 mg and now at 50 mg. I’m looking for any information that anybody could share and support.

Thanks for your response and questions. When it comes to regular meals, my wife and I adhere to a fairly strict diet because she has issues with Pancreatitis. We eat no fried foods and hardly any beef. We eat mostly Chicken, Turkey, some lean Pork, and pasta occasionally. We eat Oatmeal for breakfast every day with Strawberries, Blueberries, and Banana. The negative side of it that I eat salt in obscene amounts, and after dinner the real munching starts. Salty snacks and chocolate or other sweets. It is non-stop until bedtime.

Recently, I have stopped using all salt and sugar, and the after dinner snacking has stopped completely. Keep in mind that I just made this commitment in the past week but I have lost two pounds in the past two days. I'm sure it is mostly water weight so far but I need that positive reinforcement each time I step on the scale. Prior to the Pandemic I had lost thirty-five pounds and I was down to 198. Bascially, I sat in a recliner and played games on my phone for most of the time during the two year fiasco. I have to say that my Doctor at the time helped me with diet suppressants when I lost the 35 pounds.

I had a heart attack in May and we moved to a more exercise friendly climate in July. I am getting a lot more exercise and I've been riding my bicycle around the small town that we now live in as often as I can. With my platelets dropping so fast, I just feel like I'm in a race against time.

Hello @steve1053 and welcome to Mayo Clinic Connect. I am glad to hear you are feeling well despite your platelet level.

Members such as @kewp @poghina and @naiviv have all recently shared what they are doing to increase platelet levels and may be able to come in to welcome you and share some more.

What are you doing to reduce your weight and are you feeling successful so far?

I'm 69 years old and had a heart attack in May. After three stents, I am feeling much better than before when my main artery was 100% blocked. As a result of blood tests, we discovered that my platelet level was 62,000. They have been low for years because of treatment for Hepatitis C some twenty years ago that included Pegasus Interferon.

Since May however, my levels have dropped and they are now at 39,000. I am 5'7" and weigh 225 lbs. I know I have to lose weight and have been working on that. My questions include, how low can we go and still remain healthy? (I feel great other than the platelet level).

Other than losing weight, what can I do to help myself boost my platelet count? I had a bone marrow biopsy and the results were good.

I appreciate any response and the opportunity to share with others in this group.

There’s a helpful ITP-site online with lots of info on treatments, diets, etc: PDSA or Platelet Disorder Support Association.
(I’ve had ITP x 4 episodes, with critical platelet counts each time, since 1981.
I responded to high-dose prednisone, which had awful side-effects on me.)

I’ve had Immune ITP x4 episodes over a 27-year span of time; unrelated to CoVid boosters. However, there is a very helpful website that may have up-to-date info on ITP and COVID/boosters. You can find it online: PDSA or Platelet Disorder Support Association. Good luck.

Diagnosed with ITP, 27K, 6 weeks after second booster for Covid. Labs 6 months ago were normal. OVID search confirms a reported association.
Any idea if the booster would be a good idea? I have seen two hematologists who say they don't know.
Also, how much do I need to restrict my activity. Again, my doctors say they have no advice to give on that issue. I am 65 and riding my bicycle is one of my few pleasures.
Thanks for any ideas.