Immune Thrombocytopenia Purpura (ITP): What helps?

For now, my hematologist has me taking B12 1000mcg daily, to help with platelet count. My count usually ranges from 40-80. The last two labs I had done, really showed no increase in my platelet count? My hematologist says there's really no cure. My PC doc wasn't to pleased with his answer! My PC doc says there is a cure by changing diet. I was told to cut out fast food, junk food and anything deep fried. So far, I've cut out the deep fried and no greasy hamburgers. Plus, I've not really had any meat but grilled chicken on my salad. I have an appointment this week with a cardiologist, due to possibly having calcification of the heart arteries. I guess the good news just keeps popping up? Blah.

I mentioned recently that I was first-time diagnosed with ITP in July 2023 with platelets of 1. I have been on a tapering dose of prednisolone, starting at 70mgs, reducing 5mgs every 5 days and currently down to 25mgs. My most recent count was 114, although I did drop down to 94 the week before. I saw a haematologist whilst I was in hospital and have spoken to the registrar twice since. I feel very isolated. My gp knows little about ITP, plus it is a major issue getting an appt. I am 8 weeks on now. Please would people advise me whether they have found these symptoms to be consistent with their experiences. I am quite strong in the mornings. By lunchtime my lower legs have become heavy and weak and I feel I am having to throw them forwards. My hands are visibly shaky. I am very tired, and have fallen asleep at the breakfast or lunch table. I have started to get migraines again, which had been absent for a few months. Currently having 4-5 weekly. I have put on 6kgs with the steroids, mainly on my face and around my middle.

Hello, I recently discovered this forum. For what it’s worth sending sympathy and empathy. I’ve been stuck on Predinsone for nearly 3 years. Its side effects are frightening and as is having rare illness not understood. I can only offer this- Medical Cannabis, especially whole plant Rick Simpson Oil, helps with vast amounts of Drug Side Effects AND helps heal far too many symptoms and illnesses to list here ! If desperate and we all mostly are to be here posting I believe, try researching it on your path to manage your health. G-d bless you and everyone struggling. Hope this reply helps at all, at least knowing you are not alone.

Thank you very much for your support. I have read a lot, but would also
like to hear it from the horses’ mouths as it were. 🙂

Please may I ask you further? Do you think the symptoms I mentioned are the condition or side effects of the prednisolone? I only knew I was ill because of unexplained bruising. The symptoms have crept on over the weeks.

Hi apb,

You are not alone! I was diagnosed with TTP in 2009. The cause is unknown but it is similar to ITP. In TTP an enzyme (Adams T13) that produces platelets shuts down. I am treated with plasma pheresis and prednisone (80 mg then eventually taper off). Although the Drs. have said this is usually one and done, I have had 5 episodes. I am hospitalized and each time my hospital stay has been less. My lowest platelet was 6,000. The only symptom I noticed the first time was extreme fatigue. In the other episodes my symptoms have gradually added rashes, bruising, feeling dehydrated, headaches and dark amber colored urine. These symptoms are very consistent with TTP. I cope by resting when I can and glad when I am able to do normal activities. I did gain weight each time and am addressing the cumulative weight gain from each episode. (I got a new puppy and walking everyday). I was treated with Rituxin (rituximab) the first four episodes, but my most recent episode December 18,2022 I didn’t receive Rituximab, just Prednisone. I have labs regularly and try to look out for symptoms. I have diabetes that started as pre-diabetes and eventually over 2 decades became diabetic. The prednisone contributes to higher blood sugars. I hope this helps.

Blessings always,
Lou Ann

Looking to discuss this disorder as I was just recently diagnosed and do not know much about it other than what I’ve been told by my doctor. Any information greatly appreciated 😊

Welcome, @sherpik57. I moved your question about ITP to this existing discusion:
- Immune Thrombocytopenia Purpura (ITP): What helps? https://connect.mayoclinic.org/discussion/idiopathic-thrombocytopenia-prpura-itp/

I did this so you can read through previous posts and connect easily with fellow ITP members like @naiviv @jimmyb63 @kewp @emcdanie2006 @tonyscrow @apb @gdavid143 @lulujuice @cathy07 and many others.

sherpik, has treatment been recommended for you? What questions do you have?

@sherpik57 Welcome to Mayo Clinic Connect! Here is what Mayo Clinic has to say about ITP
https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/symptoms-causes/syc-20352325
Learn as much as you can about ITP because it will make it so much better for you. You’ll learn what questions to ask and not be afraid to ask them. I see that you also posted under blood disorders which is great. You should have lots of people answering you!
If I may ask, how did you find MC Connect?

I was diagnosed in 2017