Itching in Myelofibrosis

[Bullace]

I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfusions. In the last few months I've noticed increased itching. Last night I woke at 2.30am and the itching made it impossible for me to lie still and go back to sleep. I am on 10mg of Cetirizine Hydrochloride daily and though it seemed to work for a while, it seems not to be helping much now.

I wonder if what I eat could make a difference.

Does anyone have any experience/advice to offer?

Hilary

[ainslie]

Hilary

Sorry to hear about your itching , as a former Olympian itcher you have my sympathy.

I have PV and had impossible itching, I used daily low dose UVB phototherapy for about 10 years when I was on no meds except aspirin, UVB made a huge difference to me and also to others I know. Now I am on Ruxolitinib and itch is 99% gone, occasional mild tingle after a shower. Others on here have had benefit from Beta Alanine, others who have used BA can advise on BA , best start lowish as it can make one tingle a bit. I also found exercise for 20-30 mins before a shower helped, the more aerobic the better.

[Bullace in reply to ainslie]

Thank you so much for your sympathetic response. I'm sorry you've had the itching in the past and am very glad for you that Rux has eliminated it. It's come as a bit of a surprise to me as I was also on Rux for about 10 years and hadn't experienced the dreaded itch until now. I'll try the other remedies as suggested. Not sure about aerobic exercise before showering, but I find that I itch like mad for a very short time just after any contact with water but it soon wears off luckily. Thanks very much for your suggestions. Hilary