harrishill1

Posted , 5 users are following.

Hi everyone. Angella, sorry I suggested that you shd not just have phlebs. We do all have to make our own choices. I read that a few people with  PV have low ferritin levels. They also mentioned having leg cramps. I realized that my leg cramps are probably caused by low ferritin levels. I really want to replace iron which is ferritin. Then I could go for my walks again. However, I have read some time ago, that we shouldn't replace iron because Hydroxyurea lowers it so the red count won't be so high. I will ask my hemarologist, but he is very new to this disease. I was recently told by my health plan that I had to change to a different new hematologist. I'm not sure he will know the answer.

harrishill

0 likes, 4 replies

4 Replies

  • Posted

    Life is complicated, isn’t it?wink Leg cramps are horrible. I don’t get them but my OH does and his father did before him. Sometimes when we were together they got them at the same time. I’m ashamed to say that I couldn’t stop myself laughing then.

    Have you tried drinking tonic water? The quinine is supposed to help.

    Good luck with your new haematologist. Seeing a new person is a always a bit nerve wracking.

     

  • Posted

    Hi I take 2 Magnesium tablets and that helps . One in the morning and one at night. My issue is my veins can't do a plebotomy unfortunately and the Hydrea makes me feel terrible

    The treatment is worse than the PV

    • Posted

      Oh dear poor you there are alternatives to hydrox just keep pushing when u r at the haematologist ring up leave a message with the secretaries mine is SO good  she will ring me back at the end of the day if I have any queries I’m so lucky . Just tell them your symptoms hopefully they will have the answers good luck!
  • Posted

    Hi. harrishil.  In you answer to Angela.You are right that Hydroxyurea reduces your RBC and also the WBC. (Lower than normal as in my case). My family dr. worried about my iron level .I told him that it was from the Hydroxyurea. But he insisted to get the test. The level came back normal. The only thing my Hemothalogist  says is that we have to keep my platelets in normal range and make sure that RBC and my WBC don't go to low to avoid infections or luchimia. It's a balancing act. I have faith in my Hemothalogist.

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