Ruxolitinib

Hi again. Hope everyone is coping. I had my first biopsy to confirm mylofibrosis on the 20th of February, which was not conclusive. I then had my second one on the 17th of March and I am still waiting for the full result. Today my haemotologist recommends starting on Ruxolitinib, and i am interested in getting feedback from anyone already taking this. I’ve read that one effect is weight gain, which i would find hard, any suggestions, not only on weight gain, but in general. Thanks everyone.

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Really sorry to read of that likely diagnosis, @CarolCull. We’re part of the same Myeloproliferative neoplasms (MPN) family, if that’s any comfort. Diagnosis has been a long time coming, it would seem, with all the testing you’ve experienced but now you know what you’re living with at least. Maybe that’s a sort of relief? I hope you’re feeling okay.

I’m sure you can find others who are taking ruxolitinib as I’ve noticed it mentioned on here more often. So maybe look it up as a key word in the magnifying glass :mag: search box and you’ll find other comments.

I’ve also read about it being linked to weight gain, and maybe I’m in the minority here but I’d rather have a bit of extra protective padding these days than the opposite! I’ll look through my notes and share anything relevant.

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Thanks for replying Duncan. I agree weight gain is such a minor problem, when you put it in the bigger picture. I have no idea how long I’ll be taking the meds for, is it a long term thing and does it eventually end up with stem cell transplant. I’ll keep you informed. Carol

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Hi @CarolCull I am glad that you have a diagnosis at last.
I hope somebody will be be able to help you.
Really look after yourself.

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