Side effects of Ruxolitinib

[60Something]

I've been offered a place on the Mithridate trial and wondered if anyone can tell me about any side effects that they experience from Ruxolitinib?

[Paul_1971]

I experienced weight gain when i went on Ruxolitinib.

I also developed shingles and was then put on a daily dose of Aciclovir to combat it.

Since then no side effects that i know of.

[JediReject]

Hi 60something, , like Paul I had weight gain but no other noticeable side effects. To be honest for the shortish time I was on it at around 14-16 months I never felt so well. I didn't gain weight because my spleen shrank so i could eat more because unfortunately it didn't reduce my spleen size but might have stopped it increasing.

I think it perhaps altered my metabolism but the excess weight wasn't an issue for me as I'd lost a bit due to my MF.

Good Luck going forward.

Chris

[Inca]

Weight gain,just around waistline!!! I am smallish and slim,so I feel like an elephant now,spleen has shrunk a bit & my consultant is happy with my weight,he just laughs when I grumble about waist!!!!Feel better than I did on Hydrea,but still get fatigue.Good Luck with it.

[DJK12]

I have been on Ruxolitinib for 3 years. Spleen reduced quite quickly and platelets are at best level after 30 years of poor control. No weight gain but I remained blood transfusion dependent and use EPO injections to combat this. I have gathered from this forum that most people on Rux have this problem for first few months but it then settles down. I think I was just unlucky. Overall it has suited me well though fatigue remains. Main advice is it shouldn't be stopped suddenly.

[Otterfield]

I'm fairly new to Ruxolitinib but so far it's going well. My spleen has shrunk and I've gained weight, which I needed to do as I had lost way too much before my MF diagnosis. My blood counts are doing okay.

[S031251]

I have gained weight despite trying extremely hard to watch what I eat. But it is better that than the horrendous itch which has more or less disappeared since going on rux 2 years ago

[Inca in reply to S031251]

Yes I forgot about the itch,gone since Rux two yrs now.

[Cja1956]

I gained some weight on Ruxo as well, and my hematologist that took me off of it last year said it may have contributed to my anemia.

[MichaelS]

Hello 60Something, i was put on Ruxolitinib in November 2013, but had to stop all meds because my platelets feel drastically. The dosage was adjusted from 15mg twice daily to 10mg twice daily. I have been on that dose ever since. My spleen 'disappeared' very quickly and I felt better after being on Hydroxyurea since 1983 for Polycythaemia which turned to MF in about 2010.

Rux' probably caused a rise in cholesterol, and several skin cancers on the scalp and face, which are being treated with meds and outpatient operations including skin grafts in a couple places.

My haematologist and I are thinking of changing to pegasys because of my side effects. I think the Rux lowered my immune system enough to cause me to have covid-19, thankfully very mildly but now I am recovering from shingles!

PLEASE REMEMBER that we are all different and you taking Rux does not mean you are going to have similar problems. I am 74 and generally enjoy life 😊

[tracey13]

My husband gained weight on ruxolitanib however, we both started calorie counting and he's lost two stone . No other side effects at all it's really changed his life. We praying it last a long time .

Tracey