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Old Sun Jul 31, 2011, 12:10 PM
LynnI LynnI is offline
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Join Date: Jun 2008
Location: Ontario, Canada
Posts: 99
Hi Greg,
I started on 250 mg, 2x/d, I also had to go for weekly CBC's. He insisted that the CBC's be taken on the same day and close to the same time period each week. His biggest concern was the effects of the VPA on the liver, if I remember correctly. I am assuming he was cautious because of that, however at the time I didn't know that was a low dose. I have met a couple of his other patients that are on the VPA and they all had much higher doses. I don't know if they started low and increased or whether he started them higher.

In my case, when I started the VPA my hemoglobins were down to 70. I started the VPA on July 11th, and had my next tx on July 17th. Prior to the tx, I didn't feel any better after starting the VPA, however about 24 -36 hrs after the tx and being on the VPA for just a week I felt amazing. I hadn't been able to eat for months, forcing myself to eat a cup of food was very difficult. After the tx, I was immediately straving and able to eat very large amounts of food. I had never felt that good after getting a tx before that, yes it made me feel a bit better, yes my counts came up but never above 100.
I very guickly started to go 'pink' again, my palms, eye lids etc had colour and of course increased as the counts climbed.

Six months after starting the VPA, we had to lower the dose bc my counts were climbing too high. Dr. Wells was shaking his head about this one. We soon discontinued the VPA to low the counts. That lastest for 6 months, then my hgl crashed and quickly, I went from a hgl of 135 to 102 in less than a month. I started the VPA again and it started doing it's job, counts climbed immediately. Since then we have played around with the dosage to keep me in the 130's, so 250 mg twice a week is what works at this time.

My spleen as also been behaving it's self for the last year, it use to give me a lot of grief with a burning and/or sharp pain.

Cheers



Quote:
Originally Posted by Greg H View Post
Hi Bergit & Lynn!

In the looking around I have done on Valproic Acid, I typically found higher doses being used, as Lynn indicates.

Lynn, apologies if you have already answered this, but why did you wind up on the low dose. Did your doc start you out higher and then bring it down because of side effects, or did you just start on the low dose. I'm curious why he or she chose the lower dose, when the research is all with higher doses.

Thanks much and take care!

Greg
__________________
Lynn: 49 yrs young, Female. Dx April 2008, MDS RCMD with Myelofibrosis Gr. 3/4. Was blood transfusion dependant. Treatment: Started Valproic Acid July 11, 2008, last tx July 17, 2008. 3 yrs tx independant, normal CBC's, Life is Good.
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