Immune Thrombocytopenia Purpura (ITP): What helps?

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.

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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.

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I feel odd on prednisolone, or is it the illness? I am eating a lot and putting on weight. I am sweating a lot, particularly on my head, sometimes my hair is wet all day. My upper legs feel weak. A couple of times my blood sugar has gone down, not up as is generally the case when people go on high doses of steroids.

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I started on 70mgs prednisolone coming down by 5mgs every 5 days. My platelets have gone up from 1,7,25, 75, 115. I am still in shock though about it occurring out of the blue. If platelets can come up with steroids, wouldn’t that indicate that the bone marrow can function normally and it was more likely to have occurred for another reason?

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I feel odd on prednisolone, or is it the illness? I am eating a lot and putting on weight. I am sweating a lot, particularly on my head, sometimes my hair is wet all day. My upper legs feel weak. A couple of times my blood sugar has gone down, not up as is generally the case when people go on high doses of steroids.

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I started on 70mgs prednisolone coming down by 5mgs every 5 days. My platelets have gone up from 1,7,25, 75, 115. I am still in shock though about it occurring out of the blue. If platelets can come up with steroids, wouldn’t that indicate that the bone marrow can function normally and it was more likely to have occurred for another reason?

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Same thing happened to me. I was diagnosed with low risk MDS in 2017. My platelets ran 27 to 33. Meanwhile I had a serious ear infection lost hearing in that ear. Pneumonia another time and an abscess recently in my lower intestine. They tried platelet transfusions at least 4 times because I needed a hip
Replacement surgery and it did nothing to raise my platelets.
In March if this year they tried steroids. I was put on steroids 50mg for 5 days. My platelets rose to 68 right away. Then in July they were at 112 and then in August they were at 145.
My doctor said she doesn’t get it. Just 5 days on steroids and now they are at 145. I am wondering too. Do I have MDS or did I have a virus or bad infection. Who knows. I think blood diseases are more difficult to diagnose. I read where 40% of people are mistakenly diagnosed with MDS every year.

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