I went back to the Haematologist last week knowing things could only get worse, I felt great and had no symptoms (of ITP, thanks to prednisolone I'm writing this at 4:46am). Sure enough my count had dropped to 11 (from 25) and they were getting nervous. They did another blood test at the clinic (normally my blood is taken at the GP the day before) because they think they see lower counts in older samples and that was 17. So after 3 weeks at 80mg Prednisolone with no big increase it seems I'm not responding to it, and they want to try something else, The Haematologist mentioned two drugs, one I hadn't heard of for ITP and the other I think was dexamethasone (I really should pay attention).
I really hate taking any drugs, and hearing the usual long list of side effects I wonder why on earth I want to take these things given that I have zero symptoms. So we agreed (in my head at least) that while my count is closer to 20 than 10 I can continue to taper off the Prednisolone and not start another drug yet, although I suspect it's a matter of time (next appointment Thursday)
The diet continues to be a revelation, I have lost 9kgs despite eating 7 meals a day (3 solid, 4 juices) and have great energy levels despite getting 6 hrs sleep a night. All the tiredness, bloating, inflammation and back problems I put down to getting older I now believe was heavily related to bowel issues I've been ignoring for years are much better.
Btw I thought this was interesting reading, Prednisolone Vs Dexamethasone. It seems like Dexamethasone would have been a better choice from the start:
I think doctors try Prednisolone because it's a cheap option that may work. It didn't work for me... or lots of others on here. I also tried Dexamethasone... but it gave me persistant migraine... so that didn't work either.
I've been on Eltrombopag / Revolade for a year and a half now. It works... it still has side effects but they are managable (most of the time).
Good luck in finding something that works for you xx
The only other thing I have tried is 'anti-D' I quite liked it - raised the counts for about 6 weeks.....its intravenous in hospital, takes about 4 hours, and initaially had no other effects other than raising platlets and making me feel perky/////Then it began to lay me low for a couple of days - so instead of taing 4 hours, in my head it took over half a week out and I felt that was too costly.
By teh way can you summarise your diet for me, what I wouldnd do to lose that much weight (well apart obviously from not eating things i like!!!!!!!)
Brilliant, can you tell me your breakfast lunch and tea today and yesterday so I don't need to read all those books and it will just give me a rough idea of things to aim for, sorry be lazy!
No refined sugar, no grains, no starch. No dairy. I eat poached eggs and vegetables (avocado) for breakfast, meat broth for lunch, meat/fish and veg for dinner plus a bunch of home made smoothies during the day. Also homemade kefir. It is quite a commitment.
Wow, that does sound tough, delicious breakfast though, and strangely after a flu, I have been making chicken broths and not fancying bread and pasta.....but now feeling better and had cake!,think my flu was tellng me something !!
When I was first diagnosed, I was given a four day high dose pulse of dexamethasone it raised my count to over 100 very quickly but the side effects were dreadful. I changed to prednisolone when I relapsed and got the same results with more manageable side effects. However, I certainly wouldn't want to be on steroids if they weren't improving my count! After a further relapse, they tried me on MMF (mycophenolate mofetil) this also improved my count but I did have some slight issues with stomach problems and photosensitive skin. These were the only the side effects I experienced so it may be an option for you maybe?
I have found over the last 5 years that I don't seem to have any bleeding symptoms even with very low counts. I currently have no treatment until my count drops below 10 and there are a lot of other people on this site who live with low counts and have no treatment. We are all different and as you say the treatments do seem to often be worse than the condition. I am sensible and look out for signs of bleeding and will always get my count checked if I have any concerns. This seems to be working well for me at the moment.
Hope you too will find something that works for you
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