harrishill1

I'm roughly 8st heavier than I should be should be and the experience I have is my cell count creeps up over a 6mth period. Would u be eating or drinking anything that has lots of iron in it? Don't know if that would be the cause . Though I try to avoid anything with high iron content.

Hello again.

We were in touch a couple of years ago when I was first diagnosed and your positivity helped me a great deal.

It will be three years in August since I found I had polycytaemia and a similar thing has happened to me. My blood has been stable for quite some time but at my last check it had gone above the ideal and I had a venesection (first one for ages) My Hydroxyurea has also been increased to 2 daily. I could do to lose a few pounds but seem to have no motivation this time of year. I believe the Hydroxyurea dose is based on bodyweight so this perhaps has some relevance. Will certainly try harder from now.

Best wishes and take care

Janet

Hello Harrishill.  I took Hydroxycarbamide (aka Urea) for quite a number of years before being told to stop this drug.  Over the years the dosage was altered in line with the variable red blood cell count.  On one occasion I came off hydroxycarb. which was substituted with another large one-off dosage of Busulphan and after a few weeks , back onto Hydroxy again.  Eventually, after again reaching maximum dosage of this I was taken off and offered Ruxolitinib last year which I now take.  My blood count has been stabilised.  Your weight could be compromised by Hydroxy. but mine did not change.  Hydroxycarbamide performed well for the first few years but as the dosage increased, so did my physical problems which needed extra medical attention. Today these problems still exist but to a much lesser degree.  It is hoped these will soon be gone.  Ruxolitinib has seemingly worked well for me.  As for dieting, I have not needed to go down this route but Hydroxycarbamide could well be affecting you this way.  My experience is that some are differentlt affected by this drug but its effects are more pronounced with the higher doses taken.  Good luck with your treatment.

Hi again everyone. Thanks for your response to my question. Now, I wonder if the high red count makes me gain weight. I still have 4 pounds to lose, and hope it willl help my blood count. I still feel pretty good. I do a half hour zumba five days a weeek, and an hour zumba  on saturday. I've started weeding afternoons for a couple of hours. I feel better than my daughter does, most of the time. She also has rheumatoid arthritis, like me. Hers bothers her a lot, because she doesn't exercise very often.  HAve a nice day all.

HArris1