Hi @Maya welcome to our forum and thanks so much for showing so clearly how different countries have to work within different medical guidelines.
Thanks also for posting on here although we are a UK site.
Look after yourself and please do keep posting as I look forward to hearing more about you
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I am tolerating it well, thank you for asking @Liz59. Would never have thought Iād be content to take chemotherapy every day, but here we are! I do still get some fatigue and brain fog but nothing like after I first started treatments, thank goodness.
Like you and @Erica, Iāve been building up to longer walks and feel so grateful to be able to get outside at all. The air has also been safe enough for hiking here as weāve avoided any local wildfires so far this year 
Embarrassingly, Iāve never learnt what a kilometre is compared to a mile, I just canāt quite visualise it! But itās very impressive you walk so much every day and Iām so glad you can again, isnāt it the best being able to explore beyond the living room?!
As for the cost of our treatments, well isnāt it shocking how much they can be? Jakafi/ruxolitinib is similarly expensive where I am, whereas hydroxyurea is the equivalent of 25p per capsule, so I can see why one tends to be prescribed more than the other 
Really glad that youāre able to roam under your own steam again @Liz59, long may your medicine help with that!
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Hi @Liz59 what is your dosage in ruxolitinib?
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Erica good to hear that you are also enjoying walking again. Hope you are keeping well fingers crossed for dry weather so the walks can continue.
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Duncan glad to hear that you are responding well to treatment and that there has been no wildfires. thank you for your good wishes. My walks are not that impressive spread out over the day approx 10,000 to 12,000 steps . You can get up to 2000 just cleaning the house, sweeping washing floors etc. It does feel good as you said to leave the sitting room and get outdoors especially when you can do so without the dreadful fatigue. I think only when its gone do you really realise the impact it has. Best wishes.
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Ela my dosage of Jakavi is 10mg twice daily so 20mg a day. I hope you are recovering from your cold.Best wishes.
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Oh I know what you mean about how doing stuff around the home can quickly add to our steps!
Iāve been wearing a smart ring this summer that measures my movement, heart rate and all sorts of other stuff and itās amazing how easy it is to get exercise just from doing the laundry, for example.
So true about how great movement can feel when we know how exhausting the fatigue can be.
Long may we move about appreciatively @Liz59!
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Thank you very much for all your replies! I really appreciate it. @Duncan @Erica 
I would not have known about my Polycythaemia vera (PV) diagnosis for a long time if I had not done a blood test for my insurance company. I didnāt know anything about this disease before.
I did not have any symptoms and still do not. At the same time my PLT is 1000, HCT 0.52.
Every day I live like a normal healthy person, until then I suddenly remember that I have polycythemia vera.
I live in London and my doctor explained to me today that āStandard treatment to control blood cell count in polycythaemia vera is hydroxycarbamide or interferon alfa. Ruxolitinib would be used for people who cannot tolerate hydroxycarbamide or when the condition is resistant to it.ā And even though Ruxolitinib has shown better results in studies, it canāt be prescribed until youāve tried the standard ones. And price plays a big role here.
In my case, I was prescribed interferon alpha because I am still young (I am 51, not very young though). And for some reason, the side effect that scares me the most is hair loss. I know that everyone reacts differently to interferon alpha, but has anyone experienced this?
I start injections next week.
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Hi @Maya
I was diagnosed with Polycythaemia vera (PV) when I was 38 back in 2020 and have since had all three of the major forms of treatment mentioned.
From my personal experience I had the least side effects with interferon. No hair loss or thinning and fatigue was well controlled as too the chronic itching. I then did move onto hydroxycarbamide where my hair did begin to thin and nails started to darken and have streaks (sign of skin cancer) so stopped and moved to ruxolitinib where my fatigue has slightly increased as too struggling to shift weight due to getting the munchies a lot.
One thing that is a side effect is low mood and potential depression while being on interferon which wasnāt noticeable when I was on it but on reflection did effect me slightly and had it been more noticeable I couldāve been more proactive to get myself in a better place.
I too had concerns of the side effects but like you said everyone experiences is different and itās a case of trial and error and finding what fits you.
You will always find horror experiences online but speaking to people youāll find happy and pleasant experiences here of people on all of the treatments.
Happy to answer any questions you have or share my experiences 
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Hello again @Maya, youāre most welcome.
Iām really pleased to read that you havenāt been experiencing any symptoms. Although Iām not a doctor, Iād say itās great that your haematocrit is only just above the ānormal rangeā as this no doubt helps your blood flow more easily, reducing clotting risk.
Like you, Iād never heard of Polycythaemia vera (PV) (or any blood cancers, to be honest) and had no symptoms at diagnosis, and in fact the side effects I have now must be due to my daily hydroxyurea, namely annoying but mostly tolerable fatigue. Oh and apparently vertigo too. Iāve taken daily aspirin for over a decade which has never caused any negative side effects.
Unlike dear @Rammie18, Iāve not noticed my hair thin or nails change, but I shave my head anyway! I understand your concern. What Iām gathering, like @Rammie18 says, is that we all have such individual symptoms, reactions, and experiences taking these medicines that itās hard to generalise.
I would say though, something that alleviated a lot of my anxiety about taking chemotherapy such as hydroxyurea is what my lovely haematologist told me to reassure me of its efficacy. He pointed out that young people with sickle cell have taken hydroxyurea for decades and yet they didnāt develop a greater incidence of other cancers or complications over time. Thatās good enough for me!
Perhaps of interest are notes I shared regarding MPNs like ours from two different blood cancer conferences I attendedāapologies, theyāre quite buried in there: Northern California Blood Cancer Conference
Do keep posting, fellow Polycythaemia vera (PV) survivor!
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Maya Its hard starting any new medication as they have so many side effects. I hope the inteferon works for you without nasty side effects.
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