Sodabread

[Sodabread]

Hi all the people that replied to my post - all very helpful. I had ET for 10 years which then progressed to MF for 10 years. I was on Hydroxy but have been taken off of it last few months. I do not get any itching or night sweats and my appetite is good. I do have anemia and get tired very quickly. One of the minus points for me is the weight gain - I do not want to put on any weight as I feel comfortable as I am. Do you lose this weight gain over time?

Once again thank you for all your information. Sodabread

[DJK12]

Weight gain is certainly one of the known side effects but not everyone gets it. I put on a little as ruxolitinib took effect but really only some of what I had lost prior to it. My weight is very stable. Platelets, spleen and nightsweats all reacted positively to the drug, but I have to use EPO injections for anaemia to avoid transfusions. I gather though for most people rux induced anaemia settles after a few months so again we all react differently.

It has been a lifesaver as HU had stopped working and consultant had to take me off first Anagrelide and then Peg. Interferon.

Best wishes Diana

[JediReject]

You're very welcome Thank You. . . I put weight on but was already popping my shirt buttons with my oversize spleen. I'm not sure if Rux alters your metabolism or it simply makes you feel much better than you had been for ages and as a result you enjoy food more. It didn't shrink my spleen a jot so it wasn't that I had more room to fill in my tum but I recall eating larger meals to satiate my hunger. But as Diane points up not everyone gains weight and even if you did im sure there are ways to control it. I just bought bigger shirts 😃.

Good Luck going forward.

Chris