I have been to both hearings on this. The first was obvious it was going to be refused and a number of people on that team at the drug company lost their jobs afterwards. Second time around it was more positive. Prof Harrison was shut out of attending the first appraisal but not the second. I like to think I did my bit trying to make people on that committee understand what rux has done for me and others. I asked Prof Harrison if she was surprised by my experience with the drug and she said the decrease in itching was typical but I had an unusual increase in energy. Not that I am complaining.
Delighted to have been art of the story but all the credit should go to Claire and her team who have done the research and the hard yards or our benefit.
Comiserations to anyone with MF reading this who does not qualify but now the drug is part of the NHS armoury and will become cheaper and of increased use as its patent runs out.
By the way if anyone knows how Chris/Jedi warrior is doing please let me know by private message
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skodaguy
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How long have you been on rux? what side effects etc have you had? Did you get spleen shrinkage (if you had a large spleen) etc?
Would be good to know how people reacted to it and how its worked long term?
I know for me i am just over a year on it, no spleen shrinkage of note to report, but blood counts doing very well (im pv). I think my only side effect was shingles very early doors.
I just wish somehow i could get my spleen down. I dont really understand the mechanics but as blood counts doing well dont really understand why its still enlarged. Maybe some just refuse to shrink i dont know.
I think the news about Rux is excellent and agree that thanks to Professor Claire Harrison and her team are immeasurable. I have been on Rux for 18 mnths now and attribute it to my getting my life back - and that is not said lightly. My spleen went from 24cms to 7cm over the space of a year.
At first on high dose and then had anaemia which caused a small problem. Two transfusions and lower dose of Rux later, all was well. I have just this week had my Rux increased a little and I now take 15mg morning and evening. This was due to return of itching (mildly) and hot rushes.
I have MF by the way, following PV for two years. I know that drugs don't always work in the same way for everybody but I am so grateful for having been given the opportunity to try this by Claire Harrison and now it should be open to so many more people. Well done all.
My blood counts on the whole are good it's just the white cells that seem to stay raised but after a couple of infections this winter and a cold about to break just after blood test on Monday - I think that is the reason.
We have conversed before via email. My husband has been on Ruxolitinib for about 4 years. It has not helped the spleen shrinkage at all, (27cm), but he has now twice been to outpatients at hospital to have it shrunk by radation thereapy. First time it shrunk by 50%, after about 6 months it grew back again, and this time he has just finished the second application. Not sure what percentage the shrinkage was, but he cannot feel it at all now. Makes him feel much more comfortable, no coughing, eating well again too. Just suffers with extreme fatigue.
its good to know it has shrunk it. Have you been told anything about expectations on how long it will remain shrunk, or if at all it will remain that way.
Hi,cheridiane!How is your husband doing? How did the second radiation therapy went?
My mom is on Jakavi and apparently it stoped working,because spleen is enlarging and she suffers big pain from that. Doctor decided to put her on Hydrea as well,so waiting for some improvement.
Been on rux for around 3 and a half years with few side effects. Platelets went down initially but once got dose stabilised have been OK. Itching has returned some over time, spleen went down some but still large
I am sorry I can't remember exactly what I was on but I think it was 25mg once a day and then 15mg in the evening. It was gradually reduced over several months to 15mg morning and then 10 at night. I may not be correct on those figures though as I did not take a record. By the way, since my increase to 15mg twice a day all the itches have stopped and the flushes!
My spleen was slow to begin with going to 20cm then 15cm - the last few months it seemed to shrink rapidly and I was amazed when it reached 7cm roughly 6 mnths ago.
I have not had it checked over the past two visits but I don't think it has changed.
It is a nuisance that your spleen won't shrink but hope you are well apart from that.
How are your energy levels - mine are not as good as Skodaguy but not bad compared to what they were a year ago.
If you want to help your spleen .try to alter your intake diet ! The spleen swells and grows through hard work ,,if you decrease your intake of unsatisfactory diet it will need less work ..it's very simple ! Eat freen growing and all fresh lighter food ,,give up pastry and stodgy food ! Fat ans sugar feed the dodgy cells !!
I was on the magic trial ..with great success ,,Iv been carefully monitored by a team at addenbrooks Cambridge for 3 years on. Ruxulitnib with excellent results ,but my diet and careful eating drinking are the backup which keep me well ..you must make the decision to change you intake ..juice and filter water cleanses the system ..it's not always easy ,I was in hospital for a week on what they called sloppy diet ".it was very very bad ..it was mashed potato and packet gravy ,or yogurt ..in a plastic cup .no real green diet ..I couldn't wait to get home to feel alive again ,,been home a week and now all is working well again ..juice and fresh food without meat for a while will heal my system again ..once you decide to make the changes it becomes second nature !! If you can't recognise it ,,don't eat it !! Twinkly. Is back .....xxxxx
People in my local hospital diagnosed with MF are automatically prescribed Rux. It definitely changed my life and gives hope as well. I like Paul have a stubborn spleen it shrank from 23cm to 17 but just will not budge!!! My diet is excellent I drink loads of water eat mainly fish fresh greens and spuds!! Porridge in the morning. Initially I needed lots of blood trans but now it's only every couple of months - am with you on that one Skodaguy I assumed less trans smaller spleen which I would also love!!!
Great to see you back Twinkly hope the op went really well for you onwards and upwards!!!! I was also thinking about Chris (Jedi) so hope he's well.
Thanks to Prof Harrison again - head and shoulders above the rest for working well beyond the callof duty !
Just a pity I am just outside their catchment area....
Though I don't 'need' Rux at the moment it is comforting to know that it will be available if I do. Hopefully the patent will expire before then and the price will become realistic.
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