Hi Sadie - I wouldn't avoid Besremi just because of my experience, which seems to be quite rare. You can give it a try, as I did, and stop if you have problems. I'm so sorry to hear about your experience with Jakafi - that seems unusual, but just goes to show anything can happen and we're all different. I'm curious what tests your derm did to confirm Jakafi caused your problems, and what did your hemotologist think about it? I wonder if there was some inactive ingredient in the Jakafi that could have cause that. Jakafi seems to help most with weakness/fatigue, so it would be a shame to give it up if it's not really the cause of that terrrible reaction you had. Good luck! -Debbie
Just out of curiosity, let me know if it works for you as well.
Btw, I switched to Jakafi and that eliminated itching, amazing!
I had itching on my back for 2 years before I was diagnosed with PV. Dermatologist said it was just dry skin, lack of hydration, etc.. About a year after finding out I had PV stumbled across a comment about using Beta Alanine....worked wonders for me, no more itching at all! Well worth a try and inexpensive. Take it about 45 minutes before bathing. You will get some annoying tingling sensation around your face but don't worry, it dissipates.
Yes, about Jakafi! When I switched to Jakafi from Pegasys in 2016, the itching was a lot better, but didn’t go away completely. When I tried Besremi in 2021, the itching came back in a terrible way. At first I thought the itching was due to stopping the Jakafi, so then I did a combo (Jakafi+Besremi), but the itching remained so I had to conclude the Besremi was causing the increased itching. I’ve never heard of anyone else having this side effect. I haven’t heard of Beta Alanine before, eager to try that. Thanks for sharing!
Thank you so much. Elaine