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JAKAFI

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bernard42121
bernard42121

I am finding it difficult to tolerate Hydroxycarbamide and I was hoping that I could have the drug Jakafi which has been used in the US but because of the cost factor in the UK, has been difficult to get prescribed.  Has anybody in the UK been prescribed it and how has it worked for you.

0 likes, 18 replies

18 Replies

  • PO32_6AP
    PO32_6AP bernard42121

    Posted

    That’s a shame what dose are you on? I find  can tolerate 2 per day, but when I was asked  to increase it to 3/4  I too had too many side effects. Luckily I am still on 2 per day with vienession approximately 3 times a year . Wish you luck !
    • bernard42121
      bernard42121 PO32_6AP

      Posted

      I am on one 500 mg tablet a day but have been feeling pretty sick and tired with them.  It is also interspersed with venelsections.  Thanks for getting back to me
  • colin89866
    colin89866 bernard42121

    Posted

    I was told that Ruxilinitib was being made available in the UK unless that is another name for Jakafi ?

    Fortunately for me, I tolerate HC very well although at the moment I am only taking 9 tablets a week ( two on Sat/Sun )

    • colin89866
      colin89866

      Posted

      I should have googled it first as it is Ruxolitinib - both one and the same
    • bernard42121
      bernard42121 colin89866

      Posted

      Yes, Jakafi or Ruxolitinib is available in the UK but because it has not been approved by NICE, it can only be made available on prescription in exceptional circumstances.  My consultant is putting through a case but I don't hold out a lot of hope because of the cost factor.  Thanks for your reply

  • marie-jos6518
    marie-jos6518 bernard42121

    Posted

    Hello,

    I understand what you are going through. After 5 months on Hydrea, with fatigue, some  episodes of diarrhea and a 3 day nausea episode, I finally got approved for Jakafi by my insurance ( they had refused prior to starting Hydrea)  .  I’m in Canada. I realized that they had specific criterias to say that you don’t tolarate Hydrea, for me, it was 3 months on Hydrea at a therapeutic  level with hard to tolerate side effets.  Look into this, maybe it’s the same in UK.  I haven’t started Jakavi yet, but the stopping of Hydrea for 3 weeks helped with fatigue and other side effects. 

    • bernard42121
      bernard42121 marie-jos6518

      Posted

      I was only Hydrea for about 5 months with the same ill effects as yourself.  I came off them and had no medication apart from venalsections.  I am now so desperate as my levels are getting higher that I have gone back on the Hydrea.  In the UK it is a cost factor and although it is available because it has not been approved by NICE it is only on a real needs basis.  My consultant is putting through an exception request but I don't hold out a lot of hope.

    • marie-jos6518
      marie-jos6518 PO32_6AP

      Posted

      I was on 3 capsules a  day. Hydroxyurea is tolerable, but, for me the side effects increased with time. And fatigue is quite subtil, you just feel it, it’s not measurable, but it affects all aspects of your life. 
  • justin23294
    justin23294 bernard42121

    Posted

    I have been on Hydroxyurea 15 per week for almost two years with almost no side effects .I checked the price for Jackafi here in the US and is prohibited expensive . Like $15,000.00 for a 3 month supply . Thank god Hydroxyurea is doing the job. My platelets are now in normal range 400 K/ul . Give Hydroxyurea a chance. Side efects usually go away after a while .
  • peter98873
    peter98873 bernard42121

    Posted

    Hi Bernard 42121

    I have been prescribed Ruxolitinib now for some three years in UK.  Originally I was prescribed Hydroxycarbamide (formerly Urea) which I took for many years.  However, after some ten or more years in increasing doses it came to the stage where I was unable to physically use it any more.  The side-effects became intense and which subsequently cause me some severe physical problems.   I had by this time become a participant in the drug trials in UK for Ruxolitinib (Jakavi) and was given the placebo (Hydroxycarbamide) which only made things worse and I was eventually stopped from taking this.  As a result the consultant Haematologist was authorised to prescribe me with Ruxolitinib which, in my case, has proved an absolute benefit.  It has taken a long time for the adverse side-effects of the Hydroxy to diminish but I can say I am in a far better shape than I was before.  I started Ruxolitinib on 10mg twice daily and after about 18 months or so, this was reduced by half.  This is what I still take.   I found the Hydroxy had caused some serious effects to my well-being which are being medically treated to this day.  In my view, the Hydroxy is fine initially but as the dosage increased it created difficulties.  Ruxolitinib is no cure for MPN's

    but offers a superior and effective treatment.  It is of course a relatively new drug still and the longer term effects are unknown.  As has been stated, the drug is expensive to supply and has not been cleared for general usage in UK.

    There are other drugs and treatments that can be used by the doctors but these would need discussions with your haematologist.  No two patients are the same with this disorder which is why treatments can vary.  Hope this can answer some of your queries.  Then higher the dosage needed with Ruxolitinib will increase the supply price.

    Good luck.     Peter.

  • malikmalik71744
    malikmalik71744 bernard42121

    Posted

    how much cost Hydroxycarbamide?
    • peter98873
      peter98873 malikmalik71744

      Posted

      In UK 500mg capsules x 100 are priced  at about £10.00  but there are variations.

    • peter98873
      peter98873 malikmalik71744

      Posted

        100 capsules of 500mg each capsule totals approximately £10.00.  There are other variations for this drug dependent on the different dosages manufactured and the country of origin.  The dose quoted is for UK only - also known as Hydrea.

    • justin23294
      justin23294 peter98873

      Posted

      Well. Here in the US depending what type of drug plan you have the price can vary from $5 for sixty 500 mg capsules to over $50.My new 2018 Medicare plan D costs $20 premium per month and  the Hydroxyurea 500mg, 3 month supply (180 capsules) only costs me $10 out of pocket. Not bad at all! hopefully I can continue taking Hydroxyurea for years without side effects.
    • peter98873
      peter98873 justin23294

      Posted

      If Hydroxycarbamide (Urea) does suit you and there are negligible side-effects there should be no reason why you cannot take this (on prescription) for a long time.  Problems seem to arise when the dosage is increased over time.  Most certainly costs are a huge factor when comparing it with Jakavi which at this time is very expensive in whichever country you reside for it is a newly introduced drug in this field.
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