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POYCYTHAEMIA RV - NHS TREATMENT - JAKAVI

Posted , 6 users are following.

jim27451
jim27451

I am a 70 year old male living in Essex UK.   I was diagnosed with PRV a couple of years ago and initially put on 2 x 500mg of hydroxy carb daily. This was later reduced to 1 x 500mg daily.   This, together with a venesection every three months or so, seemed to keep things under control. I didn't have many problems with the hydroxy apart from itching and lack of  energy. During the recent cold spell I really felt the cold so didn't venture out. I have spent a few years living in Northern Germany but the recent cold spell felt much much colder than anything I experienced there. The itching was still there but the lack of energy was far worse.  My skin is very dry as is what is left of my hair.  Most of my joints and muscles are painful and I have real problem finding a position in bed that does not hurt  

My GP thought I may have a thyroid problem. Lots of blood and other tests were done but all came back "normal". I did lots of on line research and concluded that the hydroxy is causing these problems. I went to see my GP yesterday and without me mentioning my thoughts about the hydroxy, he said he too had come to the conclusion that hydroxy was probably the cause of my problems.

I am seeing my NHS consultant next month and will ask him if there any chance of being put on Jakavi so I can get my life back. What do NHS users rate my chance of getting Jakavi?

 

0 likes, 7 replies

7 Replies

  • PO32_6AP
    PO32_6AP jim27451

    Posted

    I’m 78 on 2 hydrox tabs daily but I get no side effects I think everyone is so different ! 
    • peter98873
      peter98873 PO32_6AP

      Posted

      It seems that the later one is diagnosed the less the dosage required to control the illness.  

      Peter.

  • peter98873
    peter98873 jim27451

    Posted

    Hi Jim,

    Well I don't know just how many times one needs to answer a query but I have already sent you an answer.  So if you get two answers you'll know why.  Hydroxycarbamide can take some getting used to with PRV .  It is a strong drug and like all of these types of drugs, will produce side-effects, some of them unwelcome.  Your consultant will need to convince NICE and NHS that there is an exceptional need for you to be prescribed Jakavi.   Hydroxy will deal with the blood Platelet and Haematocrit counts well where as Venesections will not do this.  So Venesections will be a line of first treatment and once this has played its part, Hydroxy will then  be considered.  Occasionally  some patients will have both treatments prescribed.  Treatments will vary from patient to patient.  I took Hydroxy for many years but in the long run I suffered severe symptoms, enough for me to be taken off the drug and given Jakavi which I have taken for over 3 years now.  At the time I was participating in the medical trials for Jakavi and thus was able to receive this treatment.   It is a very expensive drug for the NHS to supply and at this time not many people seem to be prescribed it.  It will become more available as time passes.  Personally, I think Jakavi is a better treatment than Hydroxy, mainly because it is formulated to directly treat PV etc., whereas Hydroxy has been used for other purposes and became a "best available treatment" for PV.  There are other new drugs in the pipeline which will eventually be made known.   So really it is whether your doctor is able to satisfy the criteria to be met to prescribe Jakavi.  I feel that  the short time you have used Hydroxy may not be sufficient for your purpose.  This drug does treat PV well but the long-term use is another matter.  You can but try and I wish you success.  The symptoms you are getting are not unusual at this stage of your treatment and generally will likely subside to something more comfortable.  Maybe the dosage needs adjusting.  I hope you get things sorted out soon for some of the symptoms you describe can be upsetting.    I hope this reaches you so if you receive two responses from me you'll have a good idea of what you will encounter.  Good luck.

    Peter.

     

    • jim27451
      jim27451 peter98873

      Posted

      Peter sorry for the delay in replying but here goes. I am seeing my hospital consultant soon and will put it to her that I stop the hydroxy for a few months and rely on more regular blood tests and vienisection. Hopefully after a while the problems I have been having will go away. Peter, and all the others, thanks for taking the trouble to reply.
    • peter98873
      peter98873 jim27451

      Posted

      Hi Jim,

      Thanks for your message.  It is best to discuss your predicament with your Haematologist I agree.  I would say that generally one has to be weaned off a drug such as Hydroxycarbamide as its effects can be far reaching in the body.    Generally, it is more the case that the effects of Hydroxy tend to lessen as time passes.  It is the long term usage when the dosage can increase  that one encounters any difficulties.  Overall most patients tend to tolerate this medication which will control the platelet count once  venesection has played its part initially, normally at the commencement of your treatment.  PV of course is a very variable illness and will affect people differently, such is the case with treatments.

      Let us know how you get on with your consultation, it will be interesting to hear of her thoughts.         Best wishes.

      Peter.

  • ItchyChris
    ItchyChris jim27451

    Posted

    Dear jim27451,

    I am not an expert but it sounds to me that you might also be suffering from myelofibrosis (MF). The definitive test is a bone marrow biopsy (BMB) but since this is, I believe, always accompanied by an enlarged spleen it is better (and certainly less painful) to have the size of your spleen assessed first. You haematologist should be able to do this at your next routine appointment.

    If your spleen is enlarged and continues to be large then your treatment regime should be reviewed and a BMB booked.

    ItchyChris

  • peter98873
    peter98873 jim27451

    Posted

    Hi Jim,

    I was first diagnosed with PV which over the years progressed via ET to MF which is where I now stand.  The Jakavi I now take to treat this is recognised as being a good treatment for the spleen and can only say that I have never encountered any problem in this respect, even when taking Hydroxycarbamide.   A spleen examination is done externally and causes no discomfort usually.   All my counts are back where they should be with my current treatment and I am not aware of any side-effects from Jakavi.  Each of us is different and medications can react differently between patients particularly where PV is concerned.  When you next visit your Haematologist ask a few questions about your condition and how it may be progressing and see what they can advise.  I never realised I had progressed to MF until the consultant told me, but I reckon the change occurred after almost 20 years of treatment.

    The rarity of this illness doesn't make things any easier as patients are but few.  Let us all know how you fare.

    Best wishes.    Peter

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