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One week after stopping steroids

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14 years 7 months ago #12920 by iam4ual
One week after stopping steroids was created by iam4ual
Okay I am asking a question I feel like I bug everyone to death but I just want answers from people that have had this. MOST of the time I can get better info from someone that has been thru it that I can from a DR.
After being off steroids for one week my platelets are 173000 they were dropped but just by 2000 (175000 2 weeks ago during taper) And I am currently getting over a cold virus.

My question is: I know it is good that have not dropped but should I get excited yet or not? How fast did some of you guys drop after a week off steroids?

Thank you guys for being patient with me and being so informative.
Sincerly,
Shannon
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14 years 7 months ago #12926 by aurehsalla
Replied by aurehsalla on topic Re: One week after stopping steroids
Hi Shannon - it really varies from person to person. most people fluctuate - the period of stability (and even improvement) is no exact science; it can be days, weeks or months before you go back down. but even if you drop, if you stay above 100 then that's a good thing.

I'm seeing my haema on Friday, my last count was 32 and right now i'm just hoping i haven't gone below 20. to be back above 50 would be nice, but not likely.
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14 years 7 months ago #12929 by milly
Replied by milly on topic Re: One week after stopping steroids
Hi Shannon
I am pretty new to this, but I can just tell you my experience. I got itp in Feb last year started on 75mg of prednisone and finished in November my count was anywhere between 40 and 130 while I was on prednisone. Since I have finished the highest has been 278 (after an operation, Dr said that this could be the reason for the high number). Mid Jan count was 190, mid Feb was 170. I try not to worry too much about what the numbers.
You probably have read a lot on here that ITP is unpredictable, so for the time being enjoy your high numbers, have your blood tests when needed and have a plan in the back of your mind for what your next treatment will be.Dont let this rule your life;)
I hope this helps!
There is no practice run in life.
14 years 7 months ago #12930 by
Replied by on topic Re: One week after stopping steroids
Shannon you are you and different from all the rest of us. Get excited, that's a good count. Once off prednisone I stabilized between 85k and 125k - I only had a count done 1x a year, at my physical. It was great to kind of put ITP at the back of my mind. I didn't see a hematologist for over 8 years - then I had a tetanus booster and my count tanked, my hematologist saw me [had to dig my records out of the archives] and was going to put me on prednisone again but I refused so had a WinRho IV instead. That was September 2002 and I've had a decent count ever since, not normal range but decent and no treatments.

All that to say - we are all different so just enjoy your count and live your life. When is your next count supposed to be?
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 7 months ago #12937 by Sandi
Replied by Sandi on topic Re: One week after stopping steroids
I agree with the others. No way to predict anything. You just have to live one day at a time and enjoy the high counts when you can. Try not to stress about small drops or possible drops. If it happens, you'll deal with it.
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