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Count Dropping- New Diagnosis

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13 years 10 months ago #19899 by lovemusic26
Count Dropping- New Diagnosis was created by lovemusic26
Hello again-

Well, my first month with ITP has definatley been interesting! Lowest Count was 10k on 10/26 started on 80mg of Prednisone...by 11/17 count was up to 127,000 and started to ween off the prednisone...Tapered down to 40mg per day and counts have dropped to 58,000 (11/22).. Is this normal?

I'm scared that my count is just going to keep falling if I'm not on some steroid treatment. I started seeing a hematologist at Children's Hospital Boston- he's great, but isn't sure if this is chronic ITP or just a second bout of ITP brought on by a virus...

Any thoughts? Happy Thanksgiving!
xoL
13 years 10 months ago #19903 by
Replied by on topic Re: Count Dropping- New Diagnosis
L from what I gather you were still on 80mg of prednisone and started to ween off it on 11/17 which was 5 days ago, right? If so then in 5 days the dose was cut in half - that could be too quick a drop. I was put on 60mg and was dropped to 30mg, count really bit the dust so had to go back up to 60mg again and taper slower.

Hope your count levels out and doesn't go any lower!

[Love your purple castle!]
  • 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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13 years 10 months ago - 13 years 10 months ago #19904 by Sandi
Replied by Sandi on topic Re: Count Dropping- New Diagnosis
Hi there! Yes, it's normal for counts to drop as you taper. Well, I shouldn't say 'normal', some people maintain their counts which is the intended purpose of Prednisone. About half experience a drop, but counts could also go back up by the next time you have a CBC.

No one should stay on Prednisone long term, so your doctor will probably come up with an alternative treatment if counts continue to drop. That was a very huge taper which could have contributed to the lower count.

I'm not sure if the drop was caused by the virus or not. It's possible, but only time will tell.
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13 years 5 months ago #23818 by Kateramma
Replied by Kateramma on topic Re: Count Dropping- New Diagnosis
Hello,
I had the same response not only to pred. but to everything tried. I would go up and down like a roller coaster. It's all in finding what works for you. I agree that pred is not a long term solution and the side effects should be monitored, but there are so many other routes to travel down. I tried the pred. anti-d, IVIG, and eventually splenectomy. So far I'm a year after my surgery and my counts have been steady and above normal. You will find something that works for you, if you remember you have time!! This is not a disorder that will change over night.
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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