Good report on Ruxolitinib : - MPN Voice

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Good report on Ruxolitinib


Spotted this on Facebook and nice to see a good report for a change especially as I am now taking it!


7 Replies

Thank you for posting this, Graham. How are you now feeling?


Graham7694 in reply to pj1963

Hi Paula

I think things seem to be settling down a bit. Seems to be constantly wrong due to the amount of water I am drinking but the water definitely helps. Some days energy levels are high and some days they are low but it is early days. Just completed my first 2 weeks of Ruxolitinib so am hoping for good things to come 😀 still get a little scared at times but that is probably the same for us all xx how are things with you?

Twinkly in reply to Graham7694

Hi there graham ...I have been taking ruxulitnib for 4 years ,. At first on the magic trial ,,headed by Clare Harrison's team in London .

I took 4 a day to start ,,then up to 6 a day ,. My spleen stayed small my blood was good ,,but I did have some problems with a hernia and gut problems ,,limiting my diet has been the best for me ,no pork .no red meat ,no alchole . No tinned or processed food ,,defiantly no junk food from take always canned fizzy drinks . So lots of fresh fruit x veg. Lots of filtered water and good juices .lots of salads .honey to sweeten .eggs for protein .i do drink milk .im still very well ,but my immune system isn't so good .if I get a bug ,,I get phneumonia ....

But then I am getting older ..I hope this helps you ,yes you do get tired but just take the time to relax more and an early night now and then ,,learn to pace yourself .... Ruxulitnib has been good for me ,,,

Good luck ..xxxxx. Twinkly .. Xxxxxx

pj1963 in reply to Graham7694

Hi Graham,

I'm glad things seem to be settling down for you. It is early days, yet, and I'm sure you will feel even better as the weeks pass. I feel fine and am symptom-free on Rux.

There's no denying the fact however that I too am scared at times: worrying about when the disease will progress; will the new drugs we read about be available to us if and when we need them. It is hard to stay positive all the time. We are only human, but I think that eating as well as you can (much as Twinkly says) can only benefit us, as well as keeping as fit as possible.

Paula x

Hi Twinkly - it is always good to hear some good stories 😀 the eating is not too much of an issue at the moment as I have gallstones and awaiting removal of the gallbladder! That is coming out on Friday 13th July so then it may become more of an issue as I could murder a sirloin steak!!! I did read somewhere that MF can cause high uric acid levels so that may explain the gallstones and the kidney stone that I had a few years ago. I am on Allopurinol as well as Ruxolitinib so that should stop any more stones forming - there is always a bright side 😂 I also read that Ruxolitinib can help hair growth so there is another one....

P-O-T-S in reply to Graham7694

Hi Graham,

I guess as such a large amount of your blood is plasma and a large amount of plasma is water, it's definitely a good idea to stay hydrated, It can be a struggle sometimes! Don't really want to spend half a day in the loo but it would be needed if I were to drink what was required.

I don't believe Rux is an option for me yet which I guess I should be pleased about! I can sympathize with it playing on your mind just when you think you have gotten used to the idea, you find yourself sitting there staring into the abyss for an absurd amount of time wondering how things are going to play out.

Here's to hoping Rux sorts out your ills for now and a long time to come.

All the best


Thank you Graham. It's very good to have this information. The statistics are interesting. 3 in 100,000 get PV each year globally. I would like to read research on how we became 1 of the 3!


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