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harrishill

Posted , 6 users are following.

harrishill1
harrishill1

Hi all, I usually can't complin about my PV. However, The last few months, I've noticed that my calf muscles hurt when I walk with the dogs. I've been a walker all my life, and do not want to quit. I looked up side effects for Hydroxyurea, and one side effect is sore legs. I wonder if it is because I am now taking two capsuls per day. Anyone else have this problem?

 

0 likes, 9 replies

9 Replies

  • Orseblue
    Orseblue harrishill1

    Posted

    Sorry can't give any feed back but will read all the replies as I will be put on the hydroxyurea soon. All my levels been going up very fast.

  • peter98873
    peter98873 harrishill1

    Posted

    Hello Harrishill1.  Sorry to hear you are suffering.  My own experience with Hydroxycarbamide (Urea) is that  I had few noticeable symptoms whilst taking a low dose of this drug but as this was increased to 4 or 5 per day that is when I was sorely affected and had to be taken off  to be given Ruxolitinib.  Sore legs are but one of the troublesome symptoms one can sustain with Hydroxy.  I had no problems with the dosage you are now taking but maybe you are more susceptibly affected by taking it.  My problems were with the high dosage which caused foot ulcers which are taking forever to heal up.  It also exacerbated other ailments which needed attending to.  The pain at times was intemse.  Do you by any chance take statins?  These can cause symptoms such as you have.  Another possible cause could be circulatory so it might be worth a chat with your doctor and gather his views.  I;d say, keep on walking though.  Best wishes.

    Peter.

  • richard96620
    richard96620 harrishill1

    Posted

    Hi Harrishill,

    I do not have problem taking Hydrea, I read that if Hydrea has problem with a patient, Jakafi is an option, you may want to discuss that with your doctor.

    Richard Law

     

  • peter98873
    peter98873 harrishill1

    Posted

    Hello Harrishil1,

    Just to say that Jakavi is the brand name for Ruxolitinib.  You probably will know this but others may not.   

    Peter.

    • snoop_dog_123
      snoop_dog_123 peter98873

      Posted

      Good to know. My doctor wants me to be on jakafi but it's a $2,500.00

      Copay with Medicare. I have too much income for grant help.

       

    • harrishill1
      harrishill1 peter98873

      Posted

      Hi Peter, yes heard of jakafi, but am still taking Hydroxyurea since my hematologist has been told of my side effects of blood blisters in the mouth, and thinks they are just an interaction. I just have to avoid spices, certain drugs, etc that bring on the blisters. I know he is right, so will keep on as is for now at least. It sometimes seems that more and more things cause the blood blisters. We'll see how it goes.

      We have to keep on trying.

      I feel pretty good most of the time so can't complain too much. I saw my new GP today, and she suggested that my leg muscle pain may be caused by low magnesium. I am having a blood test to determine if this is the case. Thanks for your suggestion, harrishill

    • peter98873
      peter98873 harrishill1

      Posted

      Hello Harrishill, 

      Thanks for your response.  I was particularly interested in your remarks about mouth blisters.  When taking Hydroxycarbamide (Urea) I too suffered these but was prescribed a mouthwash of Benzydamine Hydrochloride

      (Difflam Oral rinse in UK) which proved very successful.  Since moving to Ruxolitinib I have had no further problems of this nature.  Hope all goes well with your new testing.  Regards - Peter.

  • richard96620
    richard96620 harrishill1

    Posted

    Hi Harrishill,

    I experienced sore foot 2 months ago, I soak my foot in warm water with epson salt for 20 minutes. I do this once a week. It helps in my sore fooot.....Richard Law

     

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