Btw thank u @Rammie18 for always answering my Q…, you know here in our country it is so hard if you have this kind of illness cause here the doctor dont reply to u if you ask them via text message or email, if you have questions they want you to see them in the clinic always. Clinic here is 2hour drive and i am working also.
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Hi @ela
I’m not a medical professional so anything I say is from a single patient view
Pros
Keeps levels stable relatively quickly
Not chemo (hair nails etc not affected)
Tablets (size a bit big but can be broken) easy to take with no precautions
Dosage easily changeable
Don’t have to wait long for stable levels once dosage is set
No appearance changes
No issues with work or going to the gym apart from going to work and gym 
No muscle pains
Cons
Fatigue (this can be based on lots of things)
Try and avoid staying in direct sun (wise advice anyway)
Does make you vulnerable to recover from illnesses quickly/normal rate - I’ve not experienced this but if I get ill or catch something I know/expect it take longer to naturally recover
Can get utis if you don’t manage liquid intake don’t drink too much or too less
More windy
Can put on weight due to feeling hungry or getting the munchies but if your disciplined (which I’m not!) you maybe fine.
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Here is some more reliable info on ruxolitinib
https://www.mpnvoice.org.uk/about-mpns/treatments/ruxolitinib/
Aww… thank you. Great to hear I’m helping and really and always happy to do so!
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Just wanted to pop in to say I’m really pleased to read that your review showed such good news about the ruxolitinib working, dear @Rammie18! Long may that last! I hope the fatigue reduces though, I know how grim that can feel.
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Hi @Rammie18 … thank u… i started my ruxo meds , no other side effects other than feeling exhausted when walking long distance. How about you?
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Ah @Ela that’s amazing to hear!
Hopefully it’s put you in a good place!
Be sure to remember that if they bump up your dosage it’s not that things are becoming worse it’s just getting you to an optimum dosage and see how you cope with the change in meds.
Continue to monitor any noticeable differences you feel so in your next appointment it can give you some clarity as to why…
Ah thank you so much for updating us how you are! I know your experience will help many others you felt how you did 
I’m good thanks… just the daunting thoughts of returning to work and all its drama… I thought Sunday blues as a kid was bad…
Be sure to keep in touch
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Rammie18 glad to hear the ruxoliitinib is working for you. I liked your pros and cons list. Ela i hope you are getting on well with ruxolitinib. starting on it myself soon as I had to stop Hydrea due to side effects.
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Hi @Rammie18 … had cough and colds last week until now i feel so weak, i checked my hemoglobin its below normal. Have u ever experience this?
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Hi @Liz59 … how r you?
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Priority will be that your haemoglobin level is below the 0.45.
I say I noticed any coughs or colds but the fatigue I’m feeling is sporadic and my sleep has gotten worse.
One thing to be aware of is that when you get colds or coughs being on ruxolitinib will make it longer for you to recover to get back to normal energy levels.
Just completed my first proper day at work and I’m whacked out!
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Ela So far so good this is only my third day on Jakavi. The last two nights no night sweats and energy levels have slightly improved. So sorry to hear that you are having a rough time at the moment. Hopefully your cold is improving. I have never experienced Haemaglobin to be low that would make you tired and weak. Hopefully your doctors/nurses can shed some light and help you improve.
Rammie 18 sorry your sleep has gotten worse that can not be helping in your return to work. Its hard when you have been off for a while to return. Not just physically but emotionally. I was not allowed to work during covid and after been off for so long I was so nervous at the beginining. So I hope your first day got off to a good start.
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Hi everyone, I was diagnosed with polycythemia vera a year ago at the age of 50. I didn’t have any treatment yet other than aspirin and periodic venesections. Since my blood results started to get worse, I was advised to start Alfa interferon treatment in London. This spring I had another consultation at the Dana-Farber Cancer Institute in Boston. There I was told that they do not use Alfa interferon to treat Polycythaemia vera (PV) for many years already, instead they use Ruxolitinib (or Jakafi). Unfortunately, my doctor in London said that they cannot prescribe this drug to me, even privately, due to the fact that Ruxolitinib (Jakafi) is not advocated in the British guidelines to treat Polycythaemia vera (PV). So I wanted to ask how you were able to get a prescription for this drug.
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Hello there @Maya, welcome to the forum. I’m sorry to read of your diagnosis with Polycythaemia vera (PV). Last year I was diagnosed with it too, and am a similar age to you, so I just wanted to reach out to say hey I empathise!
Currently I take daily hydroxyurea and aspirin (and phlebotomy when needed), but understand that if they stop working for me then I’d change to one of the medicines you’ve mentioned. I’m intrigued by your question so look forward to what others with Polycythaemia vera (PV) know about this and might share.
Hope you’re living well with your treatments @Maya.
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Hi @Rammie18 you are right. 1week is not enough to recover from cough/colds … im still feel so weak 
… i just want to sleep all day but i have to go to work for a living .
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Hi @Liz59 how r u now? Where you from? And what are the symptoms of your dse?
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Maya I am diagnosed with Polycythaemia vera (PV). I was put on Jakavi after bad side effects from Hydrea. These included severe fatigue, I went from walking 6-7 km daily to needing a sleep after walking to the local shop. Brain fog which included confusion and memory loss. lots of mouth ulcers one that made my tongue swell which made it difficult to eat and drink. On the Jakavi card it says it can be used to treat Polycythaemia vera (PV) for people who do not respond or are intolerant to other treatment. Hope that helps. Liz59
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Ela I am from Ireland. My symptoms of Polycythaemia vera (PV) include fatigue, itching after a shower, low grade headaches and some brain fog. I also have an underactive thyroid and severe asthma. Its early days but so far Jakavi is working really well for me today will be day four. I have managed in the last couple of days to get 6-7km on my fitbit not all at once but it feels so good to be able to enjoy walking again.
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Ela forgot to add nightsweats also periodic sweating during the day.
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Duncan Hope you are tolerating the Hydrea well and keeping well. Are you getting to enjoy your walks. Another reason that Jakavi is probably not prescribed is the cost. It costs over 3000euro for a months supply. I am lucky that it Ireland there is a limit of 80 euro per month for prescription medications.
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Hi @Liz59 also be aware parts of the UK are under different health authorities can be different to England.
You also show how well that we all have different medical histories, thanks.
Brilliant km on your fitbit and as myself you are enjoying walking again, and for me it is slow and steady to build it up.
Look after yourself and please do keep posting how you are doing
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