Immune Thrombocytopenia Purpura (ITP): What helps?

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.

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.

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

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.

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! 🍀

Thank you!

My S/O is diagnosed with thrombocytopenia and Pancytopenia. I just found this out after reviewing his medical records from his recent stay at the hospital for an infected hand (fight bite). I see his RBC and WBC and platelets as well as hemoglobin are all low. He was a terrible alcoholic for many many years. I saw that as a possible reason somewhere. He has cirrhosis of the liver also. What could have caused this and how should i treat it.?The doctor never told us anything about these two symptoms/diseases. Any knowledge and insight would be helpful. I read somewhere that he could have lupus, Lukemia, bone marrow issues amd a number of other cancers and what not. How do
I proceed from here ground zero.

Good morning, @darlas1967. You and your S/O have a lot going on right now with your hip surgery coming up. I hope his hand is healing now. That had to be scary! If he has Pancytopenia that can explain the severity of his infection because that’s a condition where all of his blood numbers have dropped, compromising his immune system.

There can be a number of causes for that condition, along with the thrombocytopenia. If his doctor hasn’t already requested another appointment, considering the mention of Thrombocytopenia and Pancytopenia in his medical records, I’d suggest getting your friend back in to his Primary Care Provider to have further blood work done.

And if I may, for you, try to avoid Dr Google. That tends to lead us down rabbit holes and fills us with anxiety for the possibilities that might not be relevant. 🙃

I’ve posted a few articles below that helps to explain the diseases you’ve mentioned. But again, until there is further testing all of this is only speculation.
Thrombocytopenia
https://www.mayoclinic.org/diseases-conditions/thrombocytopenia/symptoms-causes/syc-20378293
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https://www.healthline.com/health/pancytopenia
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https://www.primehealthchannel.com/pancytopenia-definition-causes-symptoms-diagnosis-and-treatment.html#:~:text=Medical%20experts%20define%20Pancytopenia%20as%20a%20health%20condition,diseases%20that%20are%20marked%20by%20blood%20cell%20reduction.
~~
https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487

Are you able to accompany your friend to his appointments?

Pancytopenia and thrombocytopenia
All I really know is I found the diagnosis in my s/o’s medical file after he just had a recent injury and surgery to his hand. I’m in unfamiliar territory and I like to be some what familiar with what’s going on and what can be done as well as how serious this is for him. Any insight or experience would be great appreciated. A little history….he was a chronic alcoholic for all his life up until five years ago. His file said he had aplastic anemia, thrombotopenia and Pancytopenia. He also
Has cirrhosis of the liver due to alcoholism, a fatty liver, alcoholic neuropathy as well as many other I believe non relevant diagnosis’.

How did this happen what caused it or how do we find out. I see it says some medicines could cause it. He takes high blood pressure pills, diuretics, pain meds as he also needs a new hip, photonics, amd recently quit taking kratom only Taken for a short period of time.

I want to be familiar with these things so when we go in to the Dr he doesn’t lose me in big words and unfamiliarities. I want to be able to help if there are otc meds he can take or not take as well as foods etc he may need. He’s a vigilant exercise workout person so that’s covered. He’s always constantly
Drinking down bottle after bottle
Of water and has to pee constantly. A trip
To Walmart consist of at least three trips to the bathroom. He’s a godly man
And I know when I bring this up he’s
Gonna tell me to give it to
God but I can’t help but to
Want to do something if at all
Possible. How likely is it that he would start bleeding due to
Low blood cells or platelets. Would he know or would it be internally. What do we look for. He works in a tire shop
And is alway injuring his hands etc.
Thank you all for letting me vent and for any help you
May have to offer.

He also has alcoholic hepatitis if that helps.