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Hydroxyurea or Inteferon

Posted , 7 users are following.

Samve84
Samve84

Hi

I'm 32 years old was diagnosed with PV in September was having regular Venesections but they are not controlling my hematocrit very well and my iron is very low. My haemotologist wants to start me on either hydroxyurea or interferon and has given me two weeks to decide.

I don't know which one to go for, feeling very upset that I have to even consider this. I live in the UK and they don't offer Jakafi on the NHS. I have two young children to look after too.

Advice would be great on your own experiences please.

Thanks

Sam

0 likes, 12 replies

12 Replies

  • angela_o..o
    angela_o..o Samve84

    Posted

    Hello there,

    I'm not the best person to ask because I have been fighting off the decision for about a year now.confused  But just to let you know that you are not alone in your dilemma.

    I am 66 and in UK. The thing is, everybody with this disease seems to have different symptoms and different reactions to things like venesections. What works for one person doesn't work for another.

    Personally, I have a horror of taking any kind of drug. I even struggle to convince myself to take the aspirin. But I know that I am an extreme case in this respect.

    Other people will come along with their experiences of taking different drugs. All you can do is weigh up what sounds best for you, try it, hope for the best and, if it doesn't work, try something else.

    All the best.

  • frances20411
    frances20411 Samve84

    Posted

    My numbers have come down just by eliminating IRON RICH FOODS from my diet.

    NO red meats, veggies high in iron e.g. spinace, kale and if I eat frozen or package foods I look on the label and ONLY buy those low in Iron.  I know that this is opposite of what doctors order...Take IRON....I DON'T and my numbers of HCT came down...platelets (clotting) is another issue.  Also drink alot of waterand walk.  I have had PV for over 3yrs. and got tired of phlebotomies (I live in America) and eliminating Iron worked.  Try it..  Good luck!!   I also have 2 other cancers (now in remission) and jus developed galls bladder (low fat diet too)

    If I can do it you can too.

  • justin23294
    justin23294 Samve84

    Posted

    Samve84. I would go with Hydroxurea. This medication has been around for many years. I have been on hydroxyurea  for ove a year .I was diagnosed with ET (essential trubosythimia).with JAK2. i take 16 x 500mg per week my platlets are now close to normal. You may have a few side efects at the beginning. but they will go away. good luck.
  • peter98873
    peter98873 Samve84

    Posted

    Hydroxycarbamide (formerly Urea in UK) is quite well tolerated but needs regular supervision by your Haematologist.  It can prove troublesome by virtue of side effects, but these can be treated.  Interferon is not a drug usually provided to treat PV and not a great deal is known of its effects.  However, if you care to look back at former discussions on this site you should find a contributor who was faced with the same  problem concerning which of these two drugs to take.  It is interesting to read the views particularly concerning interferon that were given.  It caused untold difficulties and had to be stopped.  There is plenty of advice here about Hydroxy and will give you the reactions of those taking it.  I took Hydroxy for many a year and came off it whilst taking the maximum dosage.  There are difficulties with this drug but generally it is well tolerated.  It is not unusual for some patients to be unaffected by side-effects.

    Further, it can take take a number of months to reach the right dosage of drug for people and the right decision is essential to your well-being in the long run.  You will need to be a little patient and rely upon your Haematologist.  As far as Jakavi is concerned, this is very unlikely to be prescribed in the early stages of PV, particularly in UK because a medical trial is still current in UK hospitals and maybe in USA too.

    Youy can rest assured that as an introductory drug its cost will be a major factor and unless officially approved for general usage will not be available on prescription except in special circumstances.  I was diagnosed with PV at least twenty years ago and my diagnosis has changed via ET to MF although I never knew the changes were effective until advised by the Haematologist.  You should look forward to a good future but do seek specialist advice if you are concerned over anything.  Your Haematologist is probably the most experienced doctor you have that can deal with PV and other MPN disorders so discuss things with him/her.  Just remember,  no two people are the same so PV may well affect others in a different manner.  Keep up with your appointments and treatment and you will find your two children will not become worried by your disorder.  There is no reason, with the proper medical care, why you should not live a much longer and active life.  

  • Mimi2017
    Mimi2017 Samve84

    Posted

    You are very young to have PV.  My husband was diagnosed 16 years ago and started Hydroxyurea (1000 mg daily) with occasional phlebotomies when his numbers went up and it has controlled his blood counts really well.   Hydroxyurea is a much more affordable choice over Jakafi in the US and as such is the first drug prescribed.  I am not familiar with Inteferon in reference to use for PV.  I was under the impression that Hydroxyurea and Jakafi were the only two drugs to treat PV.
    • peter98873
      peter98873 Mimi2017

      Posted

      Hello Mimi,

      I have read your message and would concur with all you say.  Jakafi (US) and Jakavi (UK) are commercial names for the drug Ruxolitinib.  It is expensive to prescribed in both US and UK,  Hydroxycarbamide (Urea) has a proven track record with PV and well used for treatment of this disorder.  It is well publicised that PV is in many cases due to a defect in the JAK2 gene, at birth, although more recent information suggests there are some other causes that affect people in later years.  There is much that can be learned from visiting professional medical web-sites dealing with PV and other MPN disorders.  I suspect you will know this anyway.

      There are several drugs available to treat MPN's but these are relatively new and will not be generally available until approved by the various authorities.  Some details of these can be found on medical web-sites, but only the better informed ones.  I participated in the Ruxolitinib trial in UK which is still  ongoing.  It has so far, proved  itself an effective treatment.  

      Cost of course will be an issue when it comes to prescriptive uses wherever you reside.  Most of the new drugs seem to emanate from US originally.  Hope your husband keeps well. 

  • Samve84
    Samve84

    Posted

    Thank you so much everyone for your opinions. I've made the decision to give hydroxyurea a try. I'm very concerned with the side effects for both if I'm honest which is really worrying me. How soon did you feel side effects as we are going away a couple weeks after I start. Also how do you deal with taking precautions not to catch infections?

    • marie-jos6518
      marie-jos6518 Samve84

      Posted

      Hello, I was faced with the same problem last month, my dr asked me to read about Interferon and Hydroxyurea which I did. I have a niece who is a pharmacist in the hematology department of an hospital in Montreal and she says that hydroxyurea is generally better tolarated than Interferon. But, my dr doesn't like to prescribe hydroxyurea to younger patients (I'm 52 and considered young for PV) so he decided for Jakafi. For now, I am waiting for the response of my insurance company so I can start on it. It cost around 6000$ a month.

    • peter98873
      peter98873 Samve84

      Posted

      Hi Samve,

      I don't think you will have too much trouble with Hydroxycarbamide (urea) for you will almost certainly begin with a fairly light dosage.  I have found that it served me well for quite a number of years with supervision by the Haematologist.  It was after taking it for many years in increasing dosages that I began to suffer unwelcome side-effects.  Just ensure that you follow your specialists instructions and if you do have any concerns do discuss them with your specialist as soon as you are able.  Many patients do not suffer any difficulties with Hydroxy so on the balance I'd say yes, give it a go.  If it should not suit you then talk to your specialist for further advice.

      As for infections I don't think you need concern yourself yet awhile.  It may be a problem if your immune system should cause you difficulties but I am sure your haematologist will be keeping an eye on this aspect.  The best thing to do is keep fit, maintain a healthy diet and as much exercise as you are able.  Once you have taken the drug for a short while I am sure you will put it to the back of your mind.  It is like many other things in life, some people tolerate one thing and others cannot.  We are all different and this applies where drugs are concerned.  You are making the right decision so be happy.

    • Samve84
      Samve84 peter98873

      Posted

      Thank you Peter.

      I'm going to try and delay starting this if I can, I'm seeing another specialist for a second opinion as I really want to only start at a last resort so fingers crossed.

    • peter98873
      peter98873 Samve84

      Posted

      You are doing the right thing but of course, the decision is finally with you. Let us hope a further consultation will settle your decision.
  • justin23294
    justin23294 Samve84

    Posted

    I am with Peter, As i mentioned is my preveius posts I had very few side efects at the beggininig taking Hydruxyurea.But they have sinse gone. I 'm up to  16   500mg per week = 8,000 mg. total. I hope that I may reduce the dosage in the future.By the way I live in the US and i,m 81 years old. Jakafi would be out of the question for me or must of us In America. Unfortunately  here in the US we pay 3 to 4 times more for medication than the rest of the world. Its a shame. The insurance and Pharmacutical companies buy all the politicions By all means get a second opinon.

    Good luck.

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