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.
I was diagnosed with Polycythaemia vera (PV) over 4 years ago. Initially treated with weekly venesections then hydroxycarbamide. Over the years side effects became worse (many mouth ulcers and severe skin problems) Switched to Jakavi about 3 months ago on a low dose of 5mg which has increased each month to 20mg now. So far so good with no significant side effects and reasonably stable readings. More importantly it has been a game changer for me with no mouth ulcers, greatly improved skin and no itching. I have also had a couple of melanomas one of which was malignant. Both were attributed to the hydroxycarbarmide. Hope that helps
Hello there @Derek3, welcome to the forum! Sounds like you’ve had a positive head start getting used to living with Polycythaemia vera (PV), but I’m glad you found the forum now.
I was diagnosed with Polycythaemia vera (PV) last year and had similar treatments to you, namely weekly phlebotomy and daily hydroxyurea. In recent months my haematocrit has been low enough to not need the bloodletting so often. My skin did dry out horribly this year though, so with my haematologist I figured out a whole new morning high SPF moisturising regime which seems to help a lot.
Unlike you though I’ve not had those nasty sounding mouth ulcers or itching. I’m sorry you experienced that. Bet you’re glad there was another medicine other than hydroxyurea! You’ll find many others on the forum living with Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV) and Essential thrombocythemia (ET) who take ruxolitinib or interferon rather than hydroxyurea, maybe have a look around to see how others are getting on with it.
Really glad you joined the forum, fellow Polycythaemia vera (PV) survivor!
Derek3 I am on Jakavi about seven weeks . So far all is good, getting bloods next week. Side effects are I have put on some weight and my hands and feet can get quite cold. Fatigue is not as bad and can now have a hot shower. I only get itchy if I stay in too long, it’s also not as bad as before. Now have something new to add to the mix. Due to elevated calcium and parathyroid hormone in my blood I was referred to an endocrinologist. The endocrinologist thinks I might have a growth on my parathyroid. They are 99% benign and removed as a day surgery. So waiting for scans of my parathyroids and a dexa scan to see if bones have been affected. Sorry to hear you have had melanomas. I also had lots of mouth ulcers when on hydroxycarbamide. Recently due to a possible TIA I was changed from aspirin to clopidogrel. Hope you continue with no nasty side effects and stable readings. Best wishes Liz59
Hi @Derek3 welcome to our forum I am so glad that you have found us,
You have already helped fellow forum members by sharing your experiences.
Wow, doesn’t a change of medication make a difference.
I look forward to hearing more about you.
Look after yourself
Hello there @Liz59, just wanted to say how glad I am that your fatigue and itchiness have decreased, long may that be the case! I’d really miss hot/warm showers so it’s great you can turn the heat up again. I’ve been using a lovely smelling emollient shower gel in recent months and that helps my skin stay hydrated without washing away healthy skin oils.
Really sorry to read of that growth though, I’ll keep my fingers crossed that it’s benign like you say Please let us know how it turns out.
Duncan Thanks for your kindness. I was a bit fed up yesterday but I am ok today. Waiting on several appointments. A few years ago after losing weight and coughing up small amounts of blood, a ct scan showed multiple lung nodules. A biopsy isn’t done if they are under 10mm mine are all 7-8. So you have a repeat scan every year for a few years to make sure there has been no change. This will be my last one. Another appointment I am waiting on is a review with the TIA clinic to get all the results. Now I have to get scans of my parathyroids and a dexa scan. It all kind of got to me yesterday but today is a new day. I am really enjoying hot showers again. I really didn’t like lukewarm ones. I am looking forward to Tuesday next week when my eldest daughter my two grandchildren and my grand nephew are all coming over for a day of making Halloween decorations. Glad that you found a shower gel you like, I remember how dry my skin got when I was on Hydrea. Best wishes Liz59
Oh I hate waiting on appointments @Liz59
It sounds as if you have a lot going on.
Oh Tuesday next week is going to be something to look forward to with your family and making Halloween decorations.
Enjoy xx
Erica thank you for your kindness. Tuesday will be exhausting but lots of fun.
I really enjoy arts and crafts and to get to do it with my grandchildren makes it extra special. Best wishes .Liz59
Please let us know how it turns out.