MAJIC (Ruxolitinib) Trial?

Has anyone put themselves forward for this?

I saw my haematologist yesterday and she is putting my name down (I have also self-referred through MPD Voice) for this because hydroxycarbamide is not adequately controlling my platelet levels and also because I am getting side effects at the dose I need to be taking.

I would be very interested to know if anyone has used Ruxolitinib and what their experience of it has been like. I don't really want to do the 'frying pan, fire' thing if I can help it!

Thanks in advance,

Jo :-)

16 Replies

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  • Hi jo_L I can sympathise with your predicament as I have had trouble with HU and AG and was offered a trial on SAR302503. I believe these trials that some of us are being given the chance to try are very important in many ways, but for the participant they are quite daunting! I have put my faith in the medical teams and have an optimistic outlook but some days my imagination gets the better of me. I certainly didn't realise that I would have to go 3 weeks without medication prior to my trial date, and that the trial drug may not take any kind of hold on my counts for a further 6 weeks - maybe if I had of known I might not have been so keen or certainly might have been better prepared. I am lucky to have a very supportive wife and good friends. Ultimately any decision you make should be yours and yours alone, my advice would be to get as much information as possible from your haematologist including known risks then bite the bullet and try something new !

  • I generally try not to use my imagination too much - except for good things!

    I've been doing some googling about the drug and the listed side effects don't look too bad.

    I took a print-out about the trial with me when I went for my hospital appointment on Thursday so, when my haematologist said that she didn't think that HU was controlling my platelet count very well (I'm on 18 x 500mg tablets per week) and that we might need to consider trying something else, I was able to suggest this trial. She knew that the drug has produced very good results for MF in a recent trial but didn't know that it had been extended to PV and ET.

    In some ways I suppose I'm quite lucky to have both PV and ET - at least I'm trying to bring the levels of both platelets and red cells down rather than trying to reduce one and maintain the other!

    I think I would be quite nevous about coming off the HU for a while, especially given that I am on a fairly high dose just to keep my platelet levels at around 650-750 (we haven't been able to get it to reduce significantly for quite some time, although I was at 1,500 when I started on the HU in October 2010) and, as a bonus, keeping my haematocrit to a point where I only need venesections a couple of times a year. Do they monitor your blood pretty carefully when you're off the HU? I think my counts could go pretty high if left to themselves for 3 weeks!

  • Hi jo-L, I am being monitored every 2 weeks and can go to the hospital any time I like if I want an extra blood test or have any worries. I feel as if I have had a complete MOT and have no complaints about the care I am receiving. Good luck

  • Marianela

    Good for you for trying this new treatment. Hope you will tell us more about it once you start taking it. Are you on aspirin also?

  • I don't know if they'll accept me yet!

    If I do get on the trial I will probably keep a blog on this site because it will give me some sort of record as to what's going on as well.

    Yes, I am on aspirin as well - just 75mg per day.

  • marianela

    Hope you get on the trial, do you know when it is due to begin? Im also on 75mg of aspirin per day.

  • I have taken RUX it was wonderful all the symptoms ceased & I put back on the weight I had lost but had to come off it after 10weeks due to my neutraphils going down to 0.3 if they pick up again I wouldnt hesitate to go back on it at a lower dose

    Wendyhelen

  • I don't need to gain weight but it would be very good not to be having the side-effects I'm currently experiencing.

    Really, all I can do for now is to wait and see what happens.......

  • I am sure you wont regret taking it

    I felt wonderful & really normal for the first time in a couple of years the benifits I felt only after 2hours of taking the first 10mg dose, If I can take it again I shall try half the dose

  • we can put you in touch with other people who have been taking Ruxolitinib if you would like, for some help and support, let me know. And good luck on the trial.

  • That might be very good - if I get that far!

    Thanks,

    Jo :-)

  • Hello Jo_L If I can ask did you get on the trial and How are you going? I was offered, amongst other things, the opportunity to be assessed for the Ruxolitinib Trail but was fearful of the 3 week withdrawal period. Regards Hackett.

  • I've got an appointment to see a consultant in Exeter on the 29th November and I will give a full update after that......

    Jo x

  • Did you try the drug ? How old are you? Please try to reply to me !!twinkly x

  • Glad Jakafi works for you. There is recently published new of a survival advantage with it in MF.

  • When I started on ruxolitinib, the only side effects, I had was a thumping great headache,

    that was so bad, I was scared of taking it. but was told to stick with it, as there is nothing

    else, the headaches lasted about three weeks, now I am ok with them.

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