I was on Ruxolitinib for about two years @Lucky
Was very effective at reducing spleen size
Not many issues with it for me
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@DuncanB Sounds good. I get the odd spleen twinge (or perhaps ‘splinge’).
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Actually @Lucky, I think it was your positive experiences with hydroxyurea that helped me tolerate the horrible fatigue it initially caused for me, it really got me down at times, including the brain fog. Another example of how sharing stuff here can be so helpful, to so many!
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Also hahaha you should copyright “splinge”
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This gives me further hope in potential treatment options @DuncanB should my hydroxyurea stop doing its thing, although I understand ruxolitinib isn’t available all over the UK, maybe only in Scotland? Where I am it’s considered a much more expensive medicine than hydroxyurea and not often the first choice.
I actually like that hydroxyurea is such an old-school medicine now that it’s considered a generic and thus cheaper type.
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Funnily enough I never felt any pain from my spleen @Lucky despite the fact that it was 2.5 times bigger than normal when diagnosed
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Not sure @Duncan if Ruxolitinib only available in Scotland.
You’re right in saying its expensive. My jaw just about hit the floor when I checked out list price of a 28 day supply 
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Shocking isn’t it?! My treatments are all itemised (thanks to Obamacare) so I can see what even a blood test costs. The testing for gene mutations was by far the most costly part of all this, something like $5000! Thankfully reduced to far less with health insurance, but still horrifying. I really miss the NHS.
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@Duncan Glad my experience with hydroxyurea was some help. I found the Pagasys took some getting used to. At present the Ruxolitinib seems fine with no side effects. Having written that, it’s very early days.
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@DuncanB Ruxolitinib is now available in England but not as a first line treatment. Only where hydroxyurea and Pegasys have failed.
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Interesting @Lucky
It certainly played a massive part on getting me to a point where transplant was a possibility
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Didn’t realise that you weren’t under the care of the NHS @Duncan
You definitely will be well informed about costs for sure
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Yep @DuncanB sadly there’s nothing like the NHS in California where I live these days, but at least we can access great healthcare via subsidised health insurance (ours is with Kaiser Permanente).
I was lucky to have amazing NHS cardiology emergency care during my heart attack, which allows me to still be here to sing their praises!
I’m likely biased though, having grown up around my parents and uncles training and working in the NHS which influenced me to do likewise.
Still, I like to imagine I’ll move back to Wales in retirement and stomp around the mountains of my childhood. It kind of feels like I’ve had a midlife retirement already with all these illnesses! Not what I had in mind when moving to the US 
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Fingers are firmly crossed this is the right one for you @Lucky! I’ll be interested to hear how it goes, how your experiences are, and of course I hope it’s a smooth transition.
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Glad to hear that you’re getting great healthcare @Duncan
I’m sure your condition wasn’t part of the grand plan.
I was similar having moved to Highlands in 2022 and then diagnosed with Myelofibrosis a year later.
Still we can all be grateful for the great care we receive 
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Lucky you to be in such a beautiful region—often I think illness can be tolerated better when we’re able to tap into an awe of nature, perhaps that’s the case for you too. I have certainly not spent enough time in Scotland though, despite having some Scottish heritage on both sides—I can wear a couple of pretty different clashing tartans haha. Further travel plans. And yes I’m definitely grateful for great care, wherever it is!
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Hi @DuncanB so as I mentioned I am waiting and worrying about being diagnosed with Polycythaemia vera ('PV') and am getting lots of aches in legs and arms so I wonder if I’m at the Myelofibrosis stage
Is there still hope if I am?
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Hi @jasond I’m a forum volunteer and I just wanted to say a huge welcome to the group. I’m so glad you found us, though I’m sorry you’re going through such a stressful time right now.
I also want to say a big thank you to the rest of the community for jumping in with such supportive replies—this is exactly why we’re here!
From my own experience:
• I found exactly the same thing—increasing my water intake made a noticeable difference in how I felt day-to-day. It’s a simple thing, but it really helped me feel better.
• I know that “melt down” feeling well. Looking back at old blood results can make your head spin, but try not to let the past 20 years worry you. The important thing is that you are seeing a specialist now.
• In my experience, DRs can often seem very calm and non-committal until they have every single test result in front of them. It usually isn’t about hiding anything; they just prefer to work with the full facts.
The “diagnostic wait” is the hardest part. Just take it one day at a time and keep up with that hydration! We’re all here for you, so please keep us updated on how your next chat with the Dr. goes.
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Hi @jasond
Yes there’s definitely hope if it’s Myelofibrosis in my view.
I was first diagnosed with it in October 2023. Started on low maintenance chemo and ruxilitinib.
Progressed to Acute myeloid leukaemia ('AML') and aggressive chemo didn’t help get results hoped for.
Was on maintenance Venetoclax and Azacitidine for 10 months which got my blasts down to a level where I could have a Bone Marrow Transplant.
Had that in April 2025 and doing well at this point.
So while Myelofibrosis is a rare blood cancer, definitely treatments out there that can help
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Hello Jules - thank you for your kind welcome and your words of encouragement
As you say, it’s very difficult time especially with the thoughts around how long this has been going on for which may oddly explain my countless visits to my GP over the years and health anxiety for those setting although I am trying to control this.
I am worried about the progression as noted above so if there is any thoughts that would be useful although I do understand people might not want to give that advice at this stage
Thanks again
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