Immune Thrombocytopenia Purpura (ITP): What helps?

Thank you so much for your response and information. It helps to hear from someone who has been on this same journey. They did mention a possible splenectomy if these treatments do not work. However I will need a heart valve replaced in the future, so I’m hoping I can keep the spleen at least until after that. They also diagnosed me we Hpylori which I’ve read can cause your platelets not to increase until it’s eradicated.

Jimmy, hematologists specializing in ITP are available at all 3 Mayo Clinic locations and in the Mayo Clinic Health System.

Welcome @tammielou and @julesknox, interesting that you were both diagnosed with ITP at ages 9 and 8, respectively and found different effective treatments. Like Tammie, @treslynetteaba also had a splenectomy and Jules had intravenous immunoglobulin therapy (IVIG). Jules, I'm glad that this IVIG has had a long lasting effect for you.

Are there any precautions that you still take having had thrombocytopenic purpura?

I would like to comment to anyone with ITP
15 yrs ago I was diagnosed with ITP, my numbers ranged from 20 to 50, & I was plagued by a lot of very lg bruises everywhere on my body. My husband used to say I barely had to be touched & I bruised. I did a lot of different treatments & quite frankly nothing worked until a very knowledgeable & caring hematologist suggest a splenectomy. I was given a type of serum, intravenously, to raise my platelets to a suitable number so I could be operated on. Even after my operation it was a waiting game & even other tests, to check for a second spleen?? but about 6 months after my operation & monthly blood tests, my family physician announced my platelet count was up to 125! I cried tears of joy & it was a sad goodbye to my wonderful hematologist, who stuck with me to the end but my platelet count steadily rose in the following years.
Now 3yrs after my operation, my count sits at a comfortable 200, I was 51 when I was diagnosed & I’m now 66. Now a splenectomy, may not be for everyone but I have to admit it worked for me & it was the easiest & painless operation, I ever had…I would highly recommend it.
But just a few days ago I was diagnosed with Von Willebrand disease. I’m looking for someone who lives with this syndrome to give me ideas on how to manage it. I was told by specialists that this Von Willebrand & my ITP were not related.

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.

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 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.

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?

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

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?

Colleen, no I do not…..