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PV Meds question

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bill71415
bill71415

Hello, 62 y/o US male diagnosed about 5 1/2 years ago with PV and Jak-2. Been managing it with phlebotomies and baby aspirin but had bad foot pain for the past few months. Doctor prescribed 500 mg of hydroxyurea and I'm wondering what positive/negative experience folks have had with it. Reading the warnings has gotten me a bit concerned, as it is considered chemo.. I would rather go on the jakafi but, according to my hemotologist, they cannot prescribe jakafi until/unless hydroxyurea is tried first. Any comments or suggestions are welcomed.

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  • harrishill1
    harrishill1 bill71415

    Posted

    Hi bill1415. I am a female, 75 yrs old, and was also diagnosed with PV and the jac2 mutation. I have been on Hydroxyurea for about 5 yrs, and haven't had any side effects except that recently my blood went very high, and he increased the amount to three a day three days a week and two the other days. What this does, is that I find I sometimes get mouth sores if I eat certain spices, chew gum, etc. I am aware of the problem, so I seldom have the sores. I trust my hematologist. He is the best in the area of S. California. If it no longer works, then he will look at other options. It ois better to be on medication than to always have phlebotomies cause it apparently is not good to have them for too long.

    I usually feel well, and can still do the same exercise I always have. Best of luck,

    harrishill

     

    • bill71415
      bill71415 harrishill1

      Posted

      Hi Harrris, thanks for the information, you are probably right and continuing with just the phlebotomies is not the best course. I am looking forward to getting back to exercise (running) once i have the foot pain issues ironed out.

      Regards,

      Bill

    • peter98873
      peter98873 harrishill1

      Posted

      Hi harrishill,

      I can understand your foot problems inasmuch that I suffer these myself and have done so for a number of years now.  I have seen various specialists in this time, have undergone different treatments, been taken off Hydroxy but still have foot pain.  Only today have I again seen the podiatrist.  From all this it appears that the pain could be emanating from the prolonged use of the drug mentioned and that it has possibly affected the tissues and foot bone structure.  Nothing really shows up on X-Rays  etc other than a slight deterioration of the bones but these do not appear significant.  The pain is however, very real and eases with painkilling drugs.  Since I have been on Ruxolitinib I do feel the situation has improved somewhat and I suffer less.  My mobility was certainly affected but this has improved too.  I just hope this continues.  Like you, I feel reasonably well within myself.  I will continue to visit the various specialists  for their is little doubt the symptoms will not vanish overnight. As for phlebotomy, I have only needed this on one occasion after stopping Hydroxy.  For mouth ulcers I have been prescribed Difflam (in UK) Oral Rinse which dealt with the problem quickly.  These affect me no more.

      As with you I have a superb Haematology team to fall back on and think very highly of their contribution and treatment over the years.  Hope you  remain well.  Best wishes.

      Peter.

  • bill71415
    bill71415

    Posted

    Started 500MG Hydroxyurea and will see how it goes, thanks all for your input and advice.
  • bill71415
    bill71415

    Posted

    Anyone know of a good PV hemotologist in the NJ area? My regular doctor retired and the new guy is nice but doesn't seem to know alot about the disease.

    Thanks,

    Bill

    • peter98873
      peter98873 bill71415

      Posted

      Hello Bill,

      I think you will find Zapamania is in your area and she seems to be very knowledgeabale on the very information you seek.  Contact her via this forum.  Best of luck.   Peter.

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