Momelotinib ~ tips or hints?

[Sunshine_Lover]

I Have Post Essential Thrombocythemia Cal-R Positive Myelofibrosis. 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!

[Bullace]

Hello. Sorry I can't help with experience of momelotinib, as I am on fedratinib at the moment but am about to transfer to momelotinib. I would also be interested in anyone's experience of this drug. All good wishes to you. Hope it works well for you.

[Bullace]

Also, why no marmalade? I didn't know there was an issue with it!

[Sunshine_Lover in reply to Bullace]

Hi, for some reason when you take Ruxolitinib, both Grapefruit and specifically Sevilla Oranges are banned substances! What I don't understand is why Limes and Lemons are okay? As I was never told otherwise, so I have always had the these.

[DJK12 in reply to Bullace]

It is to do with the time taken for the body, probably more accurately the liver, to process the drug. It can affect blood levels and increase chances of side effects. Three drugs I take advise avoiding them. Ruxolitinib, Simvastatin and a blood thinnerApixaban. I've a feeling also when I was on Anagrelide the leaflet said not to take it with grapefruit juice.

[Bullace in reply to DJK12]

Thanks for this info. I knew about avoiding grapefruit but not about Seville oranges and marmalade. I do love marmalade!

[Wychwoodbabe]

Hi

I am exactly the same as you! ET since I was 32. Then progressed to MF and been on Rux since it was approved years ago but suffering from anaemia now so hopefully going onto Momelotinib in the next month or so. I am 73. We must keep in touch and compare.

[Sunshine_Lover in reply to Wychwoodbabe]

Hi, thanks for your message. Yes we will.. I was 50 when my ET was picked up in 2013. We moved from Somerset to Hampshire, and my new Haematologist diagnosed MF (which explained why I had lost so much weight over 16kg), thankfully very early, and I was straight onto 40mg Ruxolitinib, 2 weeks before our health authority pulled funding for early stage. I have always had bad anaemia, and was needing regular blood transfusions, a couple of years ago, my dosage was dropped, and my anaemia was never as bad, and didn't need transfusions. It all started going wrong just before Christmas, and the MF symptoms started returning. I am hoping that the move to Momelotinib will be a stop gap, as I want to have a stem cell transplant, if my nuclear medicine kidney function tests, say I can! 🤞🤞🤞🤞

[Bullace]

I'll keep my fingers crossed for you!🤞🤞🤞

[Sodabread]

Hi have been on Momelotinib for quite a while as Rux stopped working for me. It has helped to reduce my spleen a little. I did feel queasy and out of sorts for a while until my body got used to it but now no problems with it . Feel very fortunate to be on it. Hope it helps for you - we are all different in the way drugs react with us. Take care

[Bullace in reply to Sodabread]

Thanks so much for your positive post. I am also hoping for spleen reduction on momelotinib. All good wishes to you