I really don't know why my hematologist shot down the idea of pegasys. This guy specializes in MPD's in the largest cancer center that is not in a major city....
Monique, Â I think one of the biggest mistakes that many patients make is NOT being their own advocate and not challenging their doctors to be better...
I have read posts where people describe their leg pain as cramps. I began feeling a very strange feeling in my legs that I have never experienced be4. It is...
Hi to all with polycythemia vera.    I wanted to share some correspondence I had with my hemo with you guys. I had recently been nudging my hemo to try...
I started the hydroxyurea today for the 1st time. Within hours I got that yukky aluminum foil taste. I had read some of the posts about some said they have...
Hi Rob, I had to also 'coach' my relatively open minded hematologist. What I did was have him explain what several articles about Interferon meant. That way he...
I have gotten some great news about my shortness of breathe. I have been put on 5 liters of oxygen. I have put 80 pounds on in the last 2 years. Found out==...
Hey Dan thanks for the heads up. A few quetions for ya.... 1- what dose did the doc's initially want you to start with ? 2-  exactly what dosage did you...
Hi Rob, I started on .63 million IU every day for about a week, then increased to 1.25. The doctor wanted me to start with 5.0 three times a week. No way would...
thanks for the inside sccop Dan, I will pin this on my wall for sure. Â as for flusing my system of HU, the only risk one runs is the numbers getting high...
Rob, You are right on that. My once reluctant hematologist, who now is pro-Interferon for me, says that I am getting a micro dose compared to his HepC...
Monique in my case, it took a long time before I noticed anything. I still have to have cold packs on my back and front when I am heated. Sorry. Peter ...
I get this feeling in my toes and fingers. Happens when I'm overdue for a phleb. and the blood being too thick in circulating to the extremeties. ... From:...
I feel that also.? At about week 3 I am on "pins and needles" (pun intended) to get to week 4 for another phleb.? My toes are screaming for one.? Tomorrow is...
Hey Dan, I just got a prescriptoin for pegylated interferon. A great accomplishment considering the hastle. However, I learned that my insurance said that...
Hi Rob, Maybe this is not a bad thing after all. Here is what Robert the moderator of the MPD forum has to say about pegylated interferon: It is still not...
Subject: stabbing pains pins and pricks and itching. I am at my wits end. My blood values have been improving. Dr. hasn't phloebotomized me in 6 weeks, but...
... Hi Monique, I am on Rx. DOXPIN 10 MG. I take one in the moring and the other at bedtime. Along with this I also take over the counter ALLER-TEC . These...
For the itching/burning/pain/pin pricks I take 300mg Gabapentum (Neurontin) 3X day, 150 mg Rititidine and if necessary a Claritin at night.? I try to keep my...
Monique, I wish I had a suggestion; but don't even have that. Just so sorry to hear this is still going on in your life it has been quite awhile for no...
Well another blow to us with Polychthemia vera in the United States. Since no one will insure me, I've depended on the Red Cross for Phlebotomies whenever my...
Peter, I didn't even know they would help "before". Wish I had, sure could have advertised for them to help pay back for their help to us, now I am just heart...
... Yes, thanks, Pam. Is it the earthquakes that have given rise to your question? Or maybe swine flu statistics? The 'quakes are at the southern end of the...
Good to hear about the earthquakes - just knew that I read about New Zealand today and was concerned. Now, I know that the swine flu has been on the increase,...
Hi Peter, When I was getting phlebotomies my local hospital only charged $40. I think the CBC's (blood tests) were only $25. I had Blue Cross with a $4,000...
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