1st day on Ruxolitinib

[wendycu]

The doctor took me off both Hydroxy and Anagrelide to start on new medication Ruxolitinib 20mg x2 daily.

im a bit nervous about it, as I gained a lot of weight with the other medication and shielding, I don’t want to gain more.

I know I have to lose some weight (I’ve done it before and I’ll do it again) but my mind has been all over the place, with appointments, scans and planning my future transplant. (Within 5/10 year, but more likely to be short years)

I am and have been a positive person with my ET & MF, at the moment I’m not my self. I will get back there, it might just take a little time.

Thank you for reading, just needed to write something down. X

[hunter5582]

I expect the move to RUX is a good idea. Improved efficacy in managing symptoms and many people find it easier to tolerate. The only way to know is to try and see how you respond to it. Others on the forum have reported a very positive response when they switched. Wishing you success with the new treatment plan.

Doplease let us know how you get on.

[wendycu in reply to hunter5582]

Thank you, I will keep you updated. It was a big discussion to make, after 15 years being on the same medication, which is now not helping me. You just get used to the same routine.

[Scaredy_cat in reply to wendycu]

I've put on weight, partly to do lock downs but I suspect also with starting ruxolitinib. Apparently it can boost you hunger hormone. This along with possible shrinkage of your spleen can mean it is easier for you to eat more than you have done. Also for me, I had lower red blood cells so felt less inclined to walk so far. So if you watch that you don't increase your food intake and take a reasonable amount of exercise, that will help.

[skipperL]

Ruxo is good at doing away with nasty symptoms such as sweats, itching etc - but you do put on weight and I have become transfusion dependent - every 3-4 weeks. I have MF and have been on Rux for about 4 years. I am 84 - so if I can stagger on for a few more years I will be happy! Good muck. SkipperL

[ainslie]

You might find you will feel healthier on Rux than the previous combo. It easy to take and good for symptom control, some feel increased energy as well. I’ve been on it 5 years and don’t feel any hungrier , there is a tendency to increase weight, I’m up a few pounds but not been to gym because avoiding Covid. As usual by controlling what foods you eat and exercising, eg walking etc it helps. Not everyone puts on weight. Try to relax about the change ,you might feel better.😀

[PhysAssist]

My oncology pharmacist's comments on weight gain w/ Jakafi echo those above- he related the possibility mostly to people feeling better overall, and specifically to having less intra-abdominal pressure from hepato-splenomegaly [enlargement], making it easier to eat more.