itching with ET and frofenadine?

[Grendall]

hi all,

so I have just got back from my first hospital appointment and the Doc has told me to try the above for my uncontrollable itching!! He says give it a couple of weeks if not helping can add another antihistamine taken at night and if that doesn’t then will put me in interferon..

He says he doesn’t want to start ‘proper medication’ unless he has to as it’s for life!

I also have bad fatigue amongst a couple of minor symptoms.

Could anyone tel me if this works for them please? I am really at my wits end with the itching…

[ainslie]

Sorry to hear you are having the itchies, I have been an Olympic itches for 10+ years, I hope the antihistamine helps. I used UVB low dose for 10 years and it helped a lot , the sun helps but that has the usual skin cancer concerns if overdone. Rux of course usually eliminates it but maybe not ideal for ET and maybe hard to get. Interferon can stop itch for some but for a minority like me it can make it worse. I hear good things about beta alenine but have not tried it yet.

[21Rosie]

Sorry to hear of your awful itching. I know how debilitating it is and seems worse in the summer months. My haematologist suggested I try beta alinine (it’s an amino acid) and low and behold it worked like magic. 1/2 teaspoon in water - completely tasteless - prior to showering- Certainly worked for me where as OTC antihistamines did nothing to stop the itching. Beta Alinine is available at pharmacies without prescription and very inexpensive. I have read lots of other reports of it working for others too !Best of luck with it.

Rosie

[Andrew8]

I was diagnosed in 2016 with ET but after 8 months on Hydroxy developed sever fatigue episodes, which turned out to be AF, a known side effect. I had several cardio treatments which now seem to have it under control. But when my ET changed to MF I was put on Jakavi but had shingles symptoms with itching, various meds failed to control it, but I found a little organic Aloe Vera gel applied morning and evening does the trick.