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weight gain

Posted , 6 users are following.

vicki29681
vicki29681

I was diagnosided with Poly Vera july 2015.

Dr perscribed HYdrea in Sept after several trips to the lab for blood removal.

I have steadily gained weight since then . 10 pounds now just since Sept and i am so upset with this. I don't like the Hydrea as i am feeling confused and my hair is thinning and this weght gain is unerving.

I am 66 and its very hard to lose weight at this age.

I want to stop the Hydrea . Has anyone else gained weight? 

0 likes, 12 replies

12 Replies

  • clem19079
    clem19079 vicki29681

    Posted

    The only side effect I have suffered was my hair going whiter quicker. If I have gained weight because of hydrea I wouldn't know as I am over weight through street earing due to vertigo. Even if I had other serious issues I would stop taking the drug , because I have a needle phobia.the drug cut down need for venesection. Be welll
  • nandrews
    nandrews vicki29681

    Posted

    I am on Hydrea (Hyrdroxyurea) for aroun 24 years.

    I am probably no help, as though my weight has increased since then I believe it is due to eating wrong and not exercising enough.

    Are you find your weight is increasing in spite of attempts to diet?

    • vicki29681
      vicki29681 nandrews

      Posted

      yes that is the case . I have not changed my eating habits as i live a healthy life and exercise 3 times a week.  i restricted my diet for a couple weeks and i still gained a couple more pounds.
    • kaya35376
      kaya35376 nandrews

      Posted

      Hello Paul

      I am 47 now I was diagnosed with PV IN 2014 and  at the beginning had 4 phlebotomies, since then my hematorcrait has remained  42. And red and white cell is in normal range also my hemoglobin is 14 grams only my platelets are going up to 900

      Now my doctor has started me hydroxyl , 2 months ago, can you kindly advice  what kind of foods and what kind of lifestyle we should adapt to live longer as there are many scary information about the life expectancy for the people with this disease, please.

  • paul250360
    paul250360 vicki29681

    Posted

    Hi Vicki.

    At 66 you are not too old to lose weight.

    Start walking - increase time or distance each week. Eat healthy food and drink plenty of water. This is pretty simple stuff - don't overdo the exercise at first, let your body adjust -

    l'm nearly 56 and have had PRV for 26 years - l'm as fit and healthy now as l was when l 40 - l average 10 miles or 15 kms walking a day - get a fitbit or garmin and set your own challenges.

    Be positive - you can do it

    • vicki29681
      vicki29681 paul250360

      Posted

      Hello Paul 

       I have to tell you. I live a healthy life. I exercise and eat well. I go to the gym 3 times a week and i have not changed my eating habits so that is why i am upset with this weight gain. of course just recently my hip popped out so i am scheduled for surgery to realign my cup as it is a replaced hip.  

      i am fortunate not to have very many symtoms of this PV. i have joint aches but nothing unbearable. The VERY worse part of it is this ever changing body temp. I get SOOOOO hot my back is on fire then 3 minutes later i am freezing. THis happens at least 10 times a day and all through the night. It so annoying.

      Thanks for your positive comments Paul.(that was my Dads name)

      Vicki  

    • paul250360
      paul250360 vicki29681

      Posted

      Hi Vicki

      You certainly are in the wars ! You do seem to be doing everything possible to stay as well and fit as possible.

      Apart from a DVT in my leg and then pulmonary embolisms in my lungs after rupturing my achilles playing basketball 5 years ago (PRV most probably helped formation of the DVT, not the ruptured achilles!) l really do not have the "classic" symptoms of PRV and fortuneately take no drugs except from an aspro a day.

      l have minor joint aches but really as a consequence of an ageing body that has had years of playing football, cricket, basketball and athletics. l do find however since l upped the daily walking my back is better and my knee joints feel looser the more l get active.

      Weight wise, l could drop a few pounds (kilos in Australia) but fortuneately being tall l get away with it !

      Hope the hip surgery sees you up and about ASAP. 

      cheers

      Paul  

    • kaya35376
      kaya35376 paul250360

      Posted

      Hello Paul

      I am 47 now I was diagnosed with PV IN 2014 and  at the beginning had 4 phlebotomies, since then my hematorcrait has remained  42. And red and white cell is in normal range also my hemoglobin is 14 grams only my platelets are going up to 900

      Now my doctor has started me hydroxyl , 2 months ago, can you kindly advice  what kind of foods and what kind of lifestyle we should adapt to live longer as there are many scary information about the life expectancy for the people with this disease, please.

    • paul250360
      paul250360 kaya35376

      Posted

      Hello Kaya

      Sounds like your doctor has everything under control. PRV is a condition that is often undiagnosed until something severe happens like a stroke. Getting diagnosed early (l was 30 and lucky l was a blood donor) then montoring and treatment hopefully will keep the disease in check.

      l don't know much about hydroxyl as my haematologist has me only on aspirin and 3 monthly phlebotomies. My hematocrait is usually around 50. (men's are higher than women). Normal hematocrait is around 48 to 52 in men in any case.

      l eat pretty much anything. Eating a normal balanced range of food is fine - l have a couple of beers on weekends and l haven't heard that there's anything wrong with that - everything in moderation but keeping the exercise up and drinking plenty of water is beneficial, as it is for people who dont have PRV.

      My blood readings have hardly changed over 25 years. At times the disease can be more active which may mean additional phlebotomies and at times it can be less active.

      l wouldn't worry about life expectancy too much - you could get run over by a bus tomorrow ! Also at 47 the chance of a cure before you get "really old" would be a reasonable expectation.

      All the best and stay positive

    • kaya35376
      kaya35376 paul250360

      Posted

      thank you Paul

      i am happy you are fit and helping others to keep positive by your good advices. stay healthy and live longer

      thanks once again

      khaja

  • Orseblue
    Orseblue vicki29681

    Posted

    I have to start hydroxyurea in about six weeks time (after my surgery), my hematologist has told me I have to start walking then,

    one of the side effect is possible weight gain and hair thinning.

    My problem is the pain in the left back, I get after walking around for about 30 min (even slow walks).

    Hoping the new meds will fix that.

    I know what you saying about trying to lose weight, just go for

    walks in short sections. Cut the food down a little.

    • clem19079
      clem19079 Orseblue

      Posted

      You can Google the side effects of pv or pvr. Some are quite debilitating. I am on a lot of pain relief for various ailments .
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