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Immune Thrombocytopenia Purpura (ITP): What helps?
Blood Cancers & Disorders | Last Active: Nov 8 4:14pm | Replies (166)Comment receiving replies
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.
Replies to "I mentioned recently that I was first-time diagnosed with ITP in July 2023 with platelets of..."
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
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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.