PC and weight loss

Hi everybody.  I was diagnosed with PC a year ago and am managing well on Aspirin and venesections every 8 weeks or so. I am very fortunate as my worst symptoms are some fatigue and a blotchy face! My hct is now 40, so generally, I feel very lucky. 

 My big worry is weight loss. No matter how much I eat, I am steadily losing weight. I lose a pound or so every few weeks. I am now a dress size smaller than I was a year ago. I've never had a massive appetite so that has not changed, but I wondered if anyone else has had this problem. As far as I know, my spleen is not enlarged, but I'll ask the haemo to check it out when I see him in a few weeks.

It's so good to be able to speak to you all. I hope to meet some of you in Bath next Tuesday.


6 Replies

  • I am P V too,I put weight on after diagnosis and going on to Hydrea,was very skinny tho as was so poorly,now level at 50 kilos for 6 yrs,my venesection was stopped very soon ,as the medics here said I was too tiny to have blood removed so often....every country is different.Best to you Bon Courage,you will find great help here on the site .

  • Thank you Inca. I'll keep an eye on the weight and have a word with the doc. All the best to you.


  • Thanks Sandra,I had hoped to be at the Bath Forum,would love to meet the people on this site.Usually in U K at this time,but this year is not possible until later in the year,hope you benefit from it and get answers to your weight,so many issues with our very unusual disease.Keep Well,Sally

  • Thanks Inca. I'm really looking forward to the forum. Perhaps we'll meet some time. Kindest regards, Sandra

  • I have ET and am on HU and have put weight on - having a lot of difficulty getting it off!!


  • Oh Lizzie, it would be nice to have clothes that fit again.  At the moment, I seem to be fine without Hydroxy, so I have no alternative but to up my intake of chocolate! Only joking. I hope I am able to find some answers at the forum in Bath. Thanks for your reply, and good luck with the slimming. Sandra.

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