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PV Meds question

Posted , 5 users are following.

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.

0 likes, 22 replies

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  • colin89866
    colin89866 bill71415

    Posted

    I have only suffered mouth ulcers with the Hydroxycarbamide !   I too had reservations and it is a toxic drug, but that is the only reaction that I have experienced.
    • peter98873
      peter98873 colin89866

      Posted

      Hi Colin.

      My haematologist prescribed Difflam Oral Rinse to clear up my mouth ulcers which I had whilst taking Hydroxycarbamide.  Worked very well.

      Peter

  • Chippenham
    Chippenham bill71415

    Posted

    I have been on 1000 mg of Hydroxyurea for about a year and a half, no side effects from it at all that I have noticed.  I also continue to have problems with sore feet, helped by going to an accupuncturist, although that isn't covered by my insurance.  I also find stretching helps - try searching for stretching techniques to help "Plantar Fasciitis" and it will give you some techniques that may help.

    • peter98873
      peter98873 Chippenham

      Posted

      Hello Chippenham

      Whilst taking Hydroxycarbamide (formerly Urea in UK) I suffered some pretty severe pain in my feet and eventually needed to visit a hospital specialist for treatment.  If the pain becomes severe do not ignore it as it won't just go away, even if you stop the Hydroxy.  Be watchful for foot uilcers too.

      Peter.

  • peter98873
    peter98873 bill71415

    Posted

    Hello Bill,

    I was diagnosed with PV many years ago and have suffered all sorts of symptoms over this time.  One of the worst was severe pain in both feet which it is said, is a side-effect of the drug.  This caused me considerable problems.  There are quite a number of side-effects associated with PV but is isn't everyone that will suffer them.

    Some perhaps more that others.  Yes'  Hydroxy is a chemotherapy drug that has been used to treat PV for a long time.  Until more recently it was considered the best available drug to treat the disorder but more recently other newer drugs have been 

    introduced which have proven very effective, so far..  The problem here is that these new drugs prove very expensive to prescribe which is a huge deterrent for doctors and patients alike.  Jakavi is one of these.  Hope this helps.

    Peter.

  • bill71415
    bill71415

    Posted

    Thanks all for the comments - i started having the foot pain before taking any PV meds (in fact, I haven't started yet), so I think the foot pain is PV related, as I got some significant relief from a phlebotomy. I'm wondering if the Hydrea will relieve the blood condition enough to help alleviate the foot pain. I will probably try the drug soon and see how my body reacts to it, and if it helps with the foot issues, as they were severe.

     

    • peter98873
      peter98873 bill71415

      Posted

      Hi Bill,

      Hydroxy... could well alleviate your symptoms and many will attest to this.

      However, once started it requires specialist supervision to maintain a constant blood count level to keep you in balance.   This drug works well for many patients from the outset but after a prolonged period can cause some unwanted side-effects.  Your haematologist will be aware of this so do discuss with the specialist you visit, any discomfort you may suffer.  Keep and eye on your foot pain, it really should be looked at if you haven't already done so.  PV is a blood disorder that concerns the bone marrow.

      Best wishes.

      Peter.

    • bill71415
      bill71415 peter98873

      Posted

      Thanks Peter. I will start the Hydroxy and see how it goes, hope I don't get any real bad side effects.

    • peter98873
      peter98873 bill71415

      Posted

      Hi Bill, Thanks for your response.  If you do get any unwanted side effects at any stage, just make sure you discuss them with your specialist who will probably have an answer or two.

      Best wishes.    Peter

    • bill71415
      bill71415 peter98873

      Posted

      I will - the "possible side effects" of this med is pretty scary. I just don't want the cure to be worse than the disease!

      Best regards,

      Bill

    • peter98873
      peter98873 bill71415

      Posted

      Hi Bill.  I can understand your concerns but would say that you are unlikely to have side-effects that are not treatable.  Some people never get them at all.  PV can be an uncomfortable disorder as I know only too well but just take things as they come.  It is most unlikely that you will notice any drug symptoms for a long time once you have started them, and even then they may be only one or two.  The main thing is to talk with your specialist if  you notice anything different, don't just delay until your next appointment.  Most people get on pretty well with Hydroxy from the beginning.  It just needs supervising by a professional.  Good luck.

      Peter.

    • bill71415
      bill71415 peter98873

      Posted

      Thanks for the postitive words of encouragement Peter - my hemotologist will monitor my blood levels frequently once I start the meds.

      Best regards,

      Bill

    • peter98873
      peter98873 bill71415

      Posted

      Hi Bill,

      Thanks for your response.  You will find your haematologist a huge help as you go forward.  It seems everything is under control for you.  A good start.

      Peter.

    • Chippenham
      Chippenham bill71415

      Posted

      Bill - I also had the foot pain for years prior to even being diagnosed with PV, much less starting any meds.  That is why I went to an Accupuncturist and Podiatrist.  The Podiatrist got me some inserts for my shoes that help substantially when I am wearing shoes (but the pain come back when not wearing shoes), and the accupuncture would help alleviate the pain on a short term basis.
    • bill71415
      bill71415 Chippenham

      Posted

      Hi Chippenham, when the foot issues started my hemotologist told me he didn't think it was PV related (!) so I went to an orthopedist, rheumatologist, and neurologist, who finally sent me back to my hemotologist saying it was surely PV related! But wearing special shoes or inserts did nothing to relieve the pain, and in some cases made it worse!

      Thanks for the tip on accupuncture, I may try that if I can't get long-term relief.

      Regards,

      Bill

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