Immune Thrombocytopenia Purpura (ITP): What helps?

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.

Not really, there is a risk of it returning so if I notice unexpected bruising or purple spots, I get a full blood count test done to check platelet level but the mega dose of the immunoglobulin has worked for me

I’m no expert, but I’ve had 4 acute episodes of ITP with very low counts. (Some people get lowish counts remaining over time) My counts were 12K, 4K, 2K, 4K in the years of 1981, 1998, 2000, 2008. I was treated with 100 mg prednisone the first 3 episodes & 4th episode I got 2 bottles IVIG, then 60 mg prednisone. My counts then do get up over 100K, when I’m weaned from Rx. My last count was 182K, at times 200+K. I never knew the “cause” & pray it never returns, since high-prednisone is awful.
I went to UWM in 2000 when my D&C was cancelled due to ITP. The resident asked me to bring my 1998 lab/slide of bone-marrow Bx. He was concerned it showed an extremely high count of “mast cells”. He wanted me to have some gene-test but the Head Dr didn’t approve or order test.
In 2002 I took CHIP (cardiac health) diet lessons. High in fruits,veggies, fish, whole wheat. But had another ITP in 2008. So now I believe in avoiding wheat as much as I can. I do believe in gut as the immune gatekeeper, where if you have leaky gut, particles that are bad can leak thru the gut-membrane into the blood & cause health problems such as immune. I’m no expert, but you can watch YouTube’s by Dr. Roger Greenlaw, gastroenterologist. Sadly, he retired but was my Dr in 2002 (when I had an overgrowth of bad gut bacteria & an undergrowth of good gut bacteria) & he said take probiotics life long. There are also books on Leaky Gut. So that is why now I do minimal wheat, minimal red meat, minimal sugar, and lots of fruits/veggies, fish 2-3x week.
I see a hematologist yearly, in case I ever have a relapse.