Connect with others who understand.

Sign up Log in
Resources
About myMPNteam
Powered By
Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Anyone Taking Besremi For PV

A myMPNteam Member asked a question 💭
Roanoke, VA

I am a 51 year old male with PV. I was diagnosed 18 months ago and require monthly Phlebotomy. I am JAK -2 positive with an allele burden of only 1.9% but I still seem to make a lot of blood. I have a prescription for Besremi and some financial assistance and was interested in trying it but I wanted to learn from the experience of others before I decide.

If you have tried Besremi as a treatment how was it? Is it worth the cost? Were the side effects manageable?

January 6, 2023
•
View reactions
A myMPNteam Member

I have been taking Besremi since Feb 2022. I was on Pegasys for about 6 months prior. I have found the interferons to be more effective and much easier to tolerate than hydroxyurea. I also had tried therapeutic phlebotomy, but ultimately the chronic iron deficiency symptoms were worse than the PV symptoms.

Efficacy - I achieved hematologic remission within a few months of starting on the interferons. I remained phlebotomy-free for over two years, erythrocytosis controlled on 150mcg dose. The thrombocytosis is well controlled. Being on Besremi has allowed me to let my iron levels rebuild, which makes me feel better in day-to-day function. In addition, in 18 months on interferons, my allele burden has reduced from 38% to 9%.

Besremi does have some side effects. I experience mild itching and occasional rashes. This is well controlled by taking Claritin. I also experience mild leukopenia since the Besremi suppresses all blood cell lines. Recently, I have seen some elevation in liver enzymes but not enough to warrant a reduction in dose. It is enough to preclude an increase in dose, however. My HCT is up above 45% for the first time since I started on the interferons. Therefore, I just had a therapeutic phlebotomy yo take the edge off the erythrocytosis.

Note that we all respond differently to Besremi and the other treatment options for PV. Other's experience may or may not be the same thing you experience. For myself, I would say that the Besremi is definitely the best treatment option I have used. The side effects are minimal compared to the benefits. Controlling symptoms and preventing progression are my two primary treatment goals. Besremi is helping me to achieve these endpoints.

It is unfortunate that Besremi is so expensive. I am fortunate to have good insurance and only have to pay $100/month with a $2000 annual cap. Not everyone is so fortunate and cost does play a role in making this decision. I would consider the Besremi to be worth the cost, even if I did have to pay more. We each have to make our own decisions about whether the benefits of Besremi justify the cost.

Wishing you success in whatever you decide.

January 6, 2023

Related content

View All

Pros And Cons Of Doing The IV Thing That Removes Platelets. How Does This Work? How Often? How Long Does It Take Each Time? Does It Hurt?

A myMPNteam Member asked a question 💭
Tx

Does Anyone Take Jakafi For Polycythemia Vera?

A myMPNteam Member asked a question 💭
Cameron, MO

Why Don’t We Get The Best Treatment Versus The Old Routine…

A myMPNteam Member asked a question 💭
Ft Lauderdale, FL
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in