hi everyone I haven’t been on for quite a while. I stopped taking hydrea in May due to side effects. I have had a lovely few months with needing no medication and having occasional venesections. At the hospital yesterday the decision was made to start me on Jakavi for my Polycythaemia vera (PV). Just wondering how anyone who is on it felt side effects good and bad and any advice is welcome. I was given a drug alert card and had to sign a form. The prescription is gone to the chemist and she said it should be in next week.
I am getting assesssed today by an occupational company who will decide if I can return to work. I had to stop work due to the side effects of hydrea and have gotten a social welfare payment called illness benefit while off work. I have no idea what the outcome will be. Has Javaki inteferred with anyones work.
Hi @Liz59 good to hear from you again with a little catch up from the last few months.
I hope that you get on OK on Jakavi and others can share their experiences.
Please do let us know how you get on.
Really look after yourself
Your post totally resonates with my experience of reluctantly going onto hydroxycarbamide and enduring side effects and then moving on to ruxolitinib.
From my personal experience I’ve been doing really well on it. A bit of fatigue, trouble staying asleep and putting up weight from getting hungry quite often but it has kept all my necessary levels stable and at targeted levels.
Ruxolitinib is also mentioned on this post too that give you some comfort
Erica thank you for your kind words. Rammie18 thanks for your reply and the link it was helpfull. The doctor doing the occupational health asssessment for work was very understanding. The recommendation is that I get reassessed in a month, so I can see how I tolerate Jakavi. I want to return but also unsure as I want to be able to do my job properly.
Couldn’t believe the cost of Jakavi so happy I live in a country that has a system were the max you pay for prescription medication is 80euro a month. The chemist told me the cost was over 3000 euro for a months supply.