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Old 10-23-2008, 07:06 AM   #1
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kauwers HB User
polycythemia rubra vera

I was diagnosed 21 years ago when I was quite young. Shortly after I began treatment with Interferon-- approximately 19 years ago. 1 1/2 years ago I stopped taking it, as the dosage adjustment was too high and I became too ill. Since then I've had phlebotomies every 3 months or so - 2 units were drawn each of the 3 times.
The problem is now the white counts are up to 23,000 and the CRT and Hemoglobin are high but not crazy. I feel great, but now have to secure a new treatment plan.
I need help. I am 57 years old. Female. What's next? I was lucky enough to be included in an experimental treatment when I began the Intron. My internist is contacting the research physician again, but does anyone have information on this illness?

Last edited by kauwers; 10-23-2008 at 05:02 PM. Reason: grammar

 
Old 10-27-2008, 03:59 PM   #2
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Location: Dublin, Va., USA
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Pottsey1 HB UserPottsey1 HB UserPottsey1 HB User
Re: polycythemia rubra vera

Quote:
Originally Posted by kauwers View Post
I was diagnosed 21 years ago when I was quite young. Shortly after I began treatment with Interferon-- approximately 19 years ago. 1 1/2 years ago I stopped taking it, as the dosage adjustment was too high and I became too ill. Since then I've had phlebotomies every 3 months or so - 2 units were drawn each of the 3 times.
The problem is now the white counts are up to 23,000 and the CRT and Hemoglobin are high but not crazy. I feel great, but now have to secure a new treatment plan.
I need help. I am 57 years old. Female. What's next? I was lucky enough to be included in an experimental treatment when I began the Intron. My internist is contacting the research physician again, but does anyone have information on this illness?
Hi! I'm 60 and diagnosed with polycythemia in 2000. I have been on hydroxurea (500 mg) and and agrylin (1 mg) and an 81 mg aspirin. I mention Interferon to my hematologist last year and he said I didn't want anything to do with that. He said the meds he has me on is the best tretament available.
Best of Luck;
Randy

 
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Old 10-29-2008, 06:31 AM   #3
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kauwers HB User
Re: polycythemia rubra vera

Quote:
Originally Posted by Pottsey1 View Post
Hi! I'm 60 and diagnosed with polycythemia in 2000. I have been on hydroxurea (500 mg) and and agrylin (1 mg) and an 81 mg aspirin. I mention Interferon to my hematologist last year and he said I didn't want anything to do with that. He said the meds he has me on is the best tretament available.
Best of Luck;
Randy
Thanks for writing Randy,
My hemotologist said the same thing to me 21 years ago (stay away from Intron) but because I was so young the hydroxurea, etc. were not recommended just phebotomies. As you probably know the results of hydroxea consistently shows the eventuality of leukemia which I guess I finally have gotten any way.
If I had developed this later in life perhaps - like now - that's the route I would have taken. They may even put me on it now, I don't know. The Intron was tough to start with, but really not that bad over time. Check out Dr. Richard T. Silver's information on line. He did the interferon experiments, and it was his study I was included in. After so many years of injections I tied of the process.
Thanks for responding. Do you have family members with this? I found one cousin who would have been 107 by now if he were alive. He died of a heart attack, which I presume was caused by the polycythemia.
Karen
Karen

 
Old 10-30-2008, 04:22 PM   #4
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Pottsey1 HB UserPottsey1 HB UserPottsey1 HB User
Re: polycythemia rubra vera

Quote:
Originally Posted by kauwers View Post
Thanks for writing Randy,
My hemotologist said the same thing to me 21 years ago (stay away from Intron) but because I was so young the hydroxurea, etc. were not recommended just phebotomies. As you probably know the results of hydroxea consistently shows the eventuality of leukemia which I guess I finally have gotten any way.
If I had developed this later in life perhaps - like now - that's the route I would have taken. They may even put me on it now, I don't know. The Intron was tough to start with, but really not that bad over time. Check out Dr. Richard T. Silver's information on line. He did the interferon experiments, and it was his study I was included in. After so many years of injections I tied of the process.
Thanks for responding. Do you have family members with this? I found one cousin who would have been 107 by now if he were alive. He died of a heart attack, which I presume was caused by the polycythemia.
Karen
Karen
Hi Karen!
I hope all is going good with U. My doctor says most people with this disorder die from from internal hemorrhage. He says I still have many good years ahead. So far as I know I do not have any family members that is or was aflicted with polycythemia. I hope U can find a new source of treatment. I have to adjust the hydroxurea every other year or so. My last visit to the doctor showed my hematocrin level low (34.6). SO he had me drop from 1000 mg hydroxurea to 500 mg. I haven't had a phlebotomy in over 2 years. The fatigue is my biggest problem. I just take it one day @ a time. U take care & good luck!
Randy

 
Old 10-30-2008, 04:24 PM   #5
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Join Date: Oct 2008
Location: Dublin, Va., USA
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Pottsey1 HB UserPottsey1 HB UserPottsey1 HB User
Re: polycythemia rubra vera

Hi Karen!
I hope all is going good with U. My doctor says most people with this disorder die from from internal hemorrhage. He says I still have many good years ahead. So far as I know I do not have any family members that is or was aflicted with polycythemia. I hope U can find a new source of treatment. I have to adjust the hydroxurea every other year or so. My last visit to the doctor showed my hematocrin level low (34.6). SO he had me drop from 1000 mg hydroxurea to 500 mg. I haven't had a phlebotomy in over 2 years. The fatigue is my biggest problem. I just take it one day @ a time. U take care & good luck!
Randy

 
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