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dominno1987
USA
6 Posts |
 Posted - 07 Feb 2010 : 5:31:22 PM
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Hi everyone,
Im trying to taper off steroids, I was on 5mg every 2nd day and holding between 70-110. My hemo took me off the steroids completely since I was in the safe range. A week of no steroids brought me down to 45 and the hemo said I needed to go back on 5mg every 2nd day because she was worried I would keep dropping further. I would love to be off the steroids, especially seeing my grades improve in PA school now being on lower and lower doses. Many of you say that you are in the teens or twenties consistently. Should I insist my hemo let me stay off steroids? It just scares me hearing about risking spontaneously bleeding, etc. As always, thanks for any feedback.
Dominno
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FranL
USA
56 Posts |
Posted - 07 Feb 2010 : 6:38:19 PM
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My hemo likes anything above 50,000. Below 30,000 we treat. Below 10,000 I go to the hospital. You'll find lots of people here all dealing with different numbers though...this is just my plan.
Diagnosed 1996 w/counts of 2000
Whin rino, platelet trasfusion and prednisons
1997 relapse treated with Dexamethason pulse
Remission 1997 - 2006!!!
2006 2009 Dexamethasone treatments as needed
2009 June, August, September, October dex pulse
November 2009 choosing next step....
December 2009 Promacta |
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Sandi
USA
23038 Posts |
Posted - 07 Feb 2010 : 6:51:44 PM
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Dommino:
The "safe" number differs for everyone. For some people, it's 50 and for some it is lower than that.
5 mg's of Prednisone every other day shouldn't cause too many side effects. I've been on 10 mg's daily for 5 years and do not have any side effects that I notice.
There are other ways to treat if you haven't tried any.
Latest count 201,000(9/29/09).
*************************
Sandi
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lili
Canada
84 Posts |
Posted - 08 Feb 2010 : 06:17:31 AM
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Hi Dominno,
I think that if you're not bothered by those counts, then why not wait and see if they stabilize or keep on dropping, as long as you're not having bleeding issues. You could promise your hemo to check every week. If there are problems then you can go back up.
I'm pretty stable on < 5 mg of prednisone, like you. I wait until my counts are < 10 before I go back up. To be honest with you, they're usually either above 30 or below 10. There was one time they dropped to 24 and then climbed back up over 30. In any case, I'm not too worried about them until they drop below 10.
Here's hoping they stay up!
Lily |
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liamsmummy
USA
41 Posts |
Posted - 08 Feb 2010 : 08:45:36 AM
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Let's see. Basically anything about 20 my hema is comfortable with. If I go below 20 then we treat that day with WinRho. It seems to work for us. I don't usually show any signs except bruising when I get below 20k.
Jen, Mummy to Liam 5 and Emma 2. ITP since April 2009. Tried Dexamethose, WinRho, and Rituxan, back on WinRho due to serum sickness caused by Rituxan. |
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Angel85
Australia
83 Posts |
Posted - 08 Feb 2010 : 11:59:43 AM
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Anthing under 20 or so and the doctor wants to treat for me, like everyone has said it will be a different number for each individual and what they and their doctor feels comfortable with
Lauren |
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dominno1987
USA
6 Posts |
Posted - 08 Feb 2010 : 7:22:16 PM
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Thank you all so much for your feedback. It helps to hear from someone on the same side. My next count is Wednesday, I've been going in weekly for a while now. If my counts are up again, my hemo will let me taper to 2.5mg ever second day down from 5mg every second day. For now, staying positive.
Dominno |
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What is really a safe platelet count?
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