Experiences with

Ruxolitinib

Hi Crew, So I’ve been taking for a while as I have MF. I’ve just been told I have very hight cholesterol and am pre-diabetic. None of this in the family. Google states cholesterol could be from Ruxolitinib. Any wisdom or advice please?

felt great with various symptoms can any body tell me of their experiences starting ruxolitinib also can people say how long have they had polycythemia TIA 😊

So now I have started 10mg ,twice a day of Ruxolitinib plus continuing 90 peginterferon once a fortnight. with a venesection booked for tomorrow. I would be grateful to hear from anybody with similar experience. Thank you, and best wishes to all.

I was diagnosed with MF in February 2024 and have been on 15mg of ruxolitinib twice a day since April. I am not happy with just waiting, I would prefer to the a transplant and get it cured, but it seems that's not the protocol.

I have had primary MF for 10 years and have recently commenced Momenlitinib after Ruxolitinib stopped working effectively.Over the last year I have suffered at least six UTIs and it is getting me down quite a bit. Last couple showed leucocytes present.

Changed to ruxolitinib Jan this year and had no issues to date, bone pain mostly gone, no itching, no weight gain, gastric issues much better and feel well for the most part. My bloods came down pretty fast and my HCT is now .34 and Hb 115 which I think is quite low.

I have been on Ruxolitinib since 2016, but have now become resistant. I am due to start Momelotinib shortly. I know it is pretty new, does anyone have a similar experience? Any tips? I have missed orange marmalade for 8 years, I'd love to be able to have it again!

In searching info I came across this report implicating both Peg and Rux for different oral risks: https://pmc.ncbi.nlm.nih.gov/articles/PMC9176112/ This para summarizes the findings: "In a multivariate analysis including all parameters described above,treatment with Peg‐Ifn (OR = 11.4) or ruxolitinib

I have only been on Ruxolitinib for 3 months and I never had anything like this previously on hydroxy. I've also been told there is no point in going to A&E as I will not be prioritised.

asking for suggestions about increased itching,and you were all so helpful,and I have tried a lot of your ideas, but having just had some blood results come back its showing my haemoglobin is too high,and so it has been suggested that I change from peginterferon which I have been on for about 5 years to ruxolitinib

Hello all I ve had PV for 16 years, and over the last two years have had bronchitis and pneumonia for 2 months and 4 months ( I have the flu vaccine every year and have had the pneumonia vaccine ) I m now on Ruxolitinib and gather my immune system is even worse than it was!!

not yet tested for prostate cancer (I think) but still… “But two years after starting a treatment regimen that combined ruxolitinib with the checkpoint inhibitor nivolumab—a current standard of care—87% of patients were still alive, and 46% stopped exhibiting signs of cancer progression altogether.”

Hi everyone I’ve had PV for 12 years or so and have been on Ruxolitinib for the past 7 years with great success. My platelets dropped to around 450 and my haematocrit has been stable, with no side effects. My general health and fatigue levels have improved markedly.

I have be reading about ruxolitinib and wondered if anyone out there takes this medication to treat ET JAK2 ? I have read that this is to treat PV whilst also read about it being used for ET JAK2 so I’m a bit confused 🫤 Yvonne

I am hoping that people here can give me the benefit of their experience of switching from hydroxycarbamide to ruxolitinib. I had a consultation today with Prof Mead at the Churchill hospital Oxford and he is suggesting that such a switch would be a good move.

I am taking ruxolitinib for MPN and multaq is causing a reaction.

I have been on ruxolitinib for the last 3 1/2 years and am now in a position where it is no longer working as it was and I need to decide where to go from here.

The consultant suggests moving to Ruxolitinib and stopping the Peg, which I've been taking for 9 months now and doesn't appear to be effective. I've read up the info on Ruxolitinib and am a bit alarmed at the number of possible side effects.

Is there anyone else on warfarin who has experienced changes in INR when starting Ruxolitinib Thanks

The ruxolitinib appears to have not worked for him so she wants to wean him off that and onto a new drug (name forgotten) and he has been sent info about joining a clinical trial. We are both a bit overwhelmed.