BESREMi anyone?

@cariadk sounds like a great idea, I’ll surely try it next week, thanks.

@cariadk great idea, I’ll definitely try that next week. Thanks.

I Have Been On Besremi Since march No Side Affects So Far Started at 50mcg than too 100mcg than too 150 than too 200Been On 200mcg around two months platelets Are in the normal Range For Few Wks Now 338a Wk ago

I Have a CALR gene mutation Hemoglobin is around 12. White Blood Cell Count Good Red Blood Cell Count Little Low all Getting Better though.

It took me three months to get approval from UHC. They are terrible! They need to know you definitely have been diagnosed with PV and require all the tests to prove it. I receive my first drug by Fed Ex tomorrow. I had been approved for use with the injecting pen by UHC but when my doctor ordered it they said there is a problem with UHC and something with the FDA so I’m going to use syringe version instead for now. I hope someone is advocating for you. We have a pharmacy navigator in my cancer center who has handled it all. I wish you the best. Don’t give up the fight. I have Medicare part D so my max they can charge for copay is $2100. It turned out to be $1871. There are at least three places to go for help in paying, possibly to $0. I worked with Onco Drug but my earnings didn’t qualify me. And , yes, the side effects sound ominous. But if you read thru some of the entries in this sight, most are doing well, and the outcome can be life affirming! Best to you. Let me know about UHC!!

I took my first 100 mcg dose last week. When they say you may experience flu-like symptoms, joint and muscle pain, fatigue, and overall tiredness, they were not joking. I’m a 69 year old male, vigorously work out 3-4 times a week, and stay pretty busy. Didn’t matter. I’m hoping this is my body’s way of getting used to it and that the symptoms will get better soon. The alternative is not good so I’m sticking with it.

Good luck to you.

@csrb7007 I hope your side effects subside soon- Please follow up here if you have a chance, as I am debating the switch to Besremi from HU (67F with PV).

@ckmrust thank you. The side effects have slowly gotten a little better. Random waves of sweating still comes, but that is as bad as it gets, so be it.

Best of luck with your meds.

First time Besremi user.I just took my first 50 mcg shot. Currently on 500 mg Hydroxurea. I am 36 hrs out and have felt no effects. I’m beginning to think I didn’t do the shot correctly. I have to use the syringe right now due to some delay on the pens with insurance. Has anyone like me had no effects?

I took my first shot last week and have had a number of bothersome experiences. Nothing to cause me to panic. I administered the shot myself, with RN supervision, and I find it hard to imagine doing this wrong. Your body may not be reacting to the meds in a negative way.

Best of luck to you.