Immune Thrombocytopenia Purpura (ITP): What helps?

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.

In my case (and for many), the problem was my spleen destroying the platelets. I was producing lots of new platelets, but my spleen was destroying them even faster. From what I've read, response to treatment meds varies widely, so it's important to develop a good relationship with your hematologist so they know exactly how you're responding (not just what your numbers are) and can help you get what works best.

In my own case, I didn't find any recommendations for supplements. I was already taking magnesium, C, D, iron, zinc, and probiotics, but for specific reasons unrelated to ITP. (See the end of this comment for supplements that have helped greatly with the crushing fatigue.)

High dose prednisone was terrible, but effective. A series of monoclobal antibody infusions put me in remission for months, which was lovely. Some people can do these monthly, get off prednisone, and avoid surgery. In my case, after 6 months I crashed (down to 9,000 platelets/mcl), then a significant allergic reaction when we tried the monoclonal antibodies again. So that was off the table.

Since long-term prednisone use is so harmful, I ended up, after considerable resistance, carefully, sloooowly tapering off of it and having a splenectomy. In 3 days, I'll pass the year mark since surgery, and knock on wood, my platelet numbers are excellent (325K/mcl). For my circumstances, it was worth it, even considering the consequent immune impairment.

On the other hand, I have a friend with ITP whose illness went into spontaneous remission years ago and stayed there. Bodies are kind of quirky.

Back to supplements: despite the good platelet numbers, I was stuck in deep fatigue, even 8 months post-surgery. I started taking CoQ10 and NADH, both of which significantly improved my physical and mental energy levels within days. Since deep fatigue is a common complaint for those of us with ITP, it might be worth taking them. As far as I know, though, they'd have no effect at all on the ITP itself.

Thank you Colleen. There many patients who suffer from low platelets.

I think it was in December 2019 or January 2020 that my hematologist started me on Nplate after no success with IVIG and prednisone. My platelets remained in the low teens or 20's. When I started Nplate my count began to increase to the 40's after 4 or five months. I was told at those levels I was not in any danger of serious bleeding, so I was switched to Promacta. I think the real reason was Medicare and my private insurance were not happy the weekly cost of close to $50K. I was on Promacta for about 8 or 9 months and my count using a separate citrate count never got above 50. I was switched back to weekly 295/mmg infusions of Nplate and by late spring 2022 my count was up to 120. I missed one week and the count didn't decrease so I was put on an infusion every two weeks. My count has continued to increase reaching a high of 180 and has stayed above 140. I see my hematologist next month and am hoping to stop all treatment and just keep an eye on the ITP with monthly CBC and citrate counts. Nplate was the way to go for me.

Welcome Vishu, Did your doctor indicate how long it might take for the treatment with eltrombopag (Promacta) and romiplostim (Nplate) to take effect?

I am diagnosed with ITP . My platelets level is now 5000 . I just started taking ELTROMBOPAG and Romi but platelets has not increased in 3 days

Colleen, no I do not…..

Yikes, that must've been frightening for both you and your children. Thank goodness treatment is helping. Do you have a medical bracelet or necklace describing your condition?