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Newly diagnosed with ITP

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9 years 9 months ago - 9 years 9 months ago #52721 by bentleytk
Newly diagnosed with ITP was created by bentleytk
Looking for some info on ITP And method of treatment. I was diagnosed in December with a platelet count of 13,000. Hospitalized with steroid, platelets rose to 70,000. Came home, one week later dropped to 18,000. Been on prednisone now for 4 weeks. Numbers rise and drop as we taper off steroid. They were 129,000 last week (thought it was from taking papaya leaf extract) tapered to 30 mg of prednisone, numbers dropped to 89,000 in 4 days. Go back tomorrow. Want to know if anyone else sees this fluctuation in numbers, is it normal, and what has been your experience after 2 rounds of steroid?
9 years 9 months ago #52722 by
Replied by on topic Newly diagnosed with ITP
Yes numbers do fluctuate. Mine did and still do. My biggest was over 10 years ago when after the real flu my count went up from 129k to 401k and then dropped low a couple days later to 79k [without being on an ITP treatment].

What dose of prednisone were you on before you dropped it to 30mg? I started on 60mg and they dropped it to 30mg and my count hit the gutter - the drop in dose was just too much. So I did a very slow taper (won't go into details).

If your count is at 89k and staying around that you are doing well. One thing us "old timers" figured out is we don't have to have a count in the normal range - in fact my new hematologist doesn't like for a count to go too high too fast.

Let us know what your count is tomorrow.
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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9 years 9 months ago #52723 by EmilyK
Replied by EmilyK on topic Newly diagnosed with ITP
Bentley,
I know that when I was on Prednisone, the numbers went up when I was on the drug and then they dropped each time I tapered the dose. Feel free to read my thread "My Journey - Crazy Emily" I was diagnosed last January with a count of 13,000. You can read my story, understanding that the Prednisone can make you nuts. Much of the emotional condition expressed in my journal can be attributed to the Prednisone and feeling like nothing was helping! It is really scary to go from perfectly healthy to seeing a doctor all the time.

We are here to help an offer emotional support, but you need to be fully armed with understanding treatment options and whether you want to treat at all, based on your symptoms and lifestyle.

Hugs,
Emily
The following user(s) said Thank You: bentleytk
  • 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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9 years 9 months ago #52725 by Sandi
Replied by Sandi on topic Newly diagnosed with ITP
Hi Bentley! We can get you through this. We've all been there.

Most people have to go through a few treatments until they find one that they respond to. Although you did respond to Prednisone, it doesn't seem like the numbers will hold as you taper. That is common. Sometimes it can take a very slow taper and several months on Prednisone to get a remission from it. In the meantime, counts will fluctuate.

There are several treatment options and everyone responds differently to them. Some will cause remission and some are just temporary rescue treatments. The most important thing to know is that symptoms matter more than counts. Don't get too hung up on the numbers. It will make you crazy. A safe count is anything over 30k so if you can maintain that, you're doing okay.
The following user(s) said Thank You: bentleytk
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9 years 9 months ago #52726 by Robert1959
Replied by Robert1959 on topic Newly diagnosed with ITP
Bentley
I was diagnosed at 9k, given 100mg of Prednisone and in 2 days my count rose to 60k so I was released from hospital. The next week I tapered down to 75mg and my count rose to 160k but the week after that on 50mg I fell back to 13k. I was immediately increased back up to 100mg but it made no difference and I dropped down to 0. Even though it was ineffective it took another 5 months to taper off the Prednisone whilst I underwent the other treatments.
Robert
The following user(s) said Thank You: bentleytk
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 9 months ago #52745 by mrsb04
Replied by mrsb04 on topic Newly diagnosed with ITP
Bentley. This is all par for the course I'm afraid. My platelets were up and down like a yoyo for well over a year especially every time I dropped my Pred dose. Eventually after trying 3 different drugs as well as Pred I started on N plate which until last week was proving very successful. I am hoping the drop last week was due to me having a virus which has now cleared.
The following user(s) said Thank You: bentleytk
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9 years 9 months ago #52750 by bentleytk
Replied by bentleytk on topic Newly diagnosed with ITP
Thanks everyone. My numbers were at 106 today. The nurse says the fluctuation is from the tapering. I started at 100mg of Pred, am now down to 20mg. I appreciate the imput as this is frustrating.
  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 9 months ago #52752 by mrsb04
Replied by mrsb04 on topic Newly diagnosed with ITP
106..I'd be throwing a party if my count got into treble figures
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