Immune Thrombocytopenia Purpura (ITP): What helps?

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?

Collen…. so far so good. I was comatose for 4 days before my kids found me in a puddle of blood, I had bleed out from my menstrual period. The doctors did plasma exchange….for two weeks and barely a response. Finaly they tried Rituxan alongwith a high dosage of predisone. But, yes….the Rituxan treatments we saw an increase of platlets which helped the Adams13 to rise out of the negative. It was a miracle….. at the start I had no platelets, Adams13 was non exrxistent, no blood, had to get several blood transfusions, along with 20 or more bags of plasma and this is what I was told from my hematologist after waking up

Welcome @emcdanie2006. I love your tips about hydration, getting iron and nutrients through a good diet of vegetables, and doing the activities you enjoy.

Sorry to hear about the relapse. Have you tolerated Rituxan well in the past?

I was diagnosed with iTTP in 2017 and it has been an adventure. Recently, had a relapse will begin Rituxan at the end of September 2022. Its been 15 months since the last treatment and Adams13 sitting at 42. I have found that eating or juicing veggies, fish, walking,,, drinking water, pedialyte and or coconut water. The main take away lots of veggies high in iron and nutrients. Lots of hope and prayer-ITTP is a very scary condition. My worse symptoms are headaches and fatigue. Everyone be safe and watch, watch those numbers.