My count came back at 205.. Pretty good from my initial diagnosis of 6..
Expecting to be reduced to 5mg Prednesone for the next week..
It's driving me insane that they want to drop me off it so slowly.. I just want to get off the meds and get back to a normal life.. So sick of the side effects of the Prednesone..
I feel a lot more at ease with the count so high.. But I also feel like I'm going to get kicked down a notch at some point waiting for that test that comes back saying its a low count again..
Has anyone had massive drops from this high before.?? That's my biggest fear atm..
Written by
Chelley075
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I was diagnosed at the beginning of July 2016 with a count of 1. Started off on 60mg of Prednisone and weaned slowly down to 5mg then off completely at the beginning of October.
I felt so much better of when I was off the steroids, physically and psychologically. You do have to patient though, you can't rush getting off them.
My count has fluctuated over the last 7-8 weeks but it is currently at 212 so fingers crossed.
Just like you I fear a big drop every time I go for a test. But the pearls of wisdom expressed on this site have encouraged me to get on with life, be positive and at the same time alert for any warning signs.
Did you drop straight off it after 5 mg or wean off slowly from there??
My Haemotologist said 5mg then 4 then 3....2...1mg!! Frustrating!! I don't see why they can't just go 5 them 2.5 & off from there or even off from 5 mg..
I originally started off on 75mg then a very slow drop to now..
I think I've pretty much had all the side effects of the Prednesone.
I hate looking like I have the moon face and the excess weight..
I just want to get back to my normal fit and active self.. Lol
Good to hear your count is stable at 212.Can you let me know what was your highest n lowest..does count flutuated lot..My count flutuated with steriod starting with 90 then 100 then 150 then 139 now again 107 with alternate day 5mg predisolone .so far waiting to see what stable I will be able to maintain
I'd be reluctant to call my count stable as ITP seems to be unpredictable.
With regard to your question on fluctuation. On the steroids (over 3 months) I fluctuated between 47 and 222. Off the steroids nearly 3 months between 222 and 208. I'm not taking anything for granted though. I am having another test on Monday 5th December so we shall see.
Nice. .Happy to hear..n wish you good health with new year..I m doing fine with count but now m six week off steroid insomnia side effect has reduced but still not yet came to normal pattern of sleep.hope side effect will reduce with time..
Similarly I wish you good health too. It's great that you are doing so well ..... I am confident hat you sleep pattern will return to normal. I've been off the steroids for 3 months and 2 weeks and I feel back to normal (whatever that is).
Chell' looks like u are going through pretty much what my daughter is going through wit be on the high dosage of prednisone and now dealing with the pie face.i pray for her daily that she stays strong as she has to deal with such a change in her appearance and I pray for u as well.stay strong and love u no matter what...praying for cure for this disease soon🙏
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Feeling like CRAP
