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.

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

A myMPNteam Member asked a question 💭
Ft Lauderdale, FL
May 18
View reactions
A myMPNteam Member

For ET due to CAl-R mutation, I was OK on HU for about 3 years, when it was only one pill per day, but had evil digestive issues during the next year, when it was increased to a second pill some days of the week. I switched last December to a hematologist who is also an MPN specialist. He had me gradually changing over a six month period from HU to Anagrelide, which has meant the end of the messy diarrhea. He told me that HU is the drug of first choice but if people have problems with it, Anagrelide may work better. That's been true for me. I had read about Interferon and Besremi on this site so asked about them. I'm not sure why, but he prefers Anagrelide for me.

May 20
A myMPNteam Member

No answer, just share the rational. Europe and the USA offer Interferon Alpha 2B as a first line treatment. I live in Canada, there is no way I’ll be getting it. Requested to join a phase three trial. Apparently it was closed, only 100 accepted. I’ve done a cost analysis to purchase as a private citizen. Very expense and would deplete my retirement savings. Another issue would be, who is going to monitor my progress even if I could afford it.
I’m certain cost is the driving factor. It’s funny how the governments of the world fast tracked Covid vaccines. I say ‘best to date’ options should be made available.

May 20
A myMPNteam Member

For example; why be given hydrea vs the highly researched and effective interferon?

May 20
A myMPNteam Member

I think they use Hydrea for cost. I’ve heard the newer treatments are very expensive. My mother had PV 24 years ago and it was controlled with Hydrea. I am taking it for ET.

May 28
A myMPNteam Member

I do not believe that they have received FDA approval for use of ropeinterferon/Bestemi for ET yet. I know there are clinical trials for it.

May 21

Related content

View All

Has Anyone With MF Been Offered The New Drug Approved This Month, Momelotinib Or Spoken To Their Provider About It?

A myMPNteam Member asked a question 💭
Ridgeway, SC

Is Anyone Know About Navitoclax Or Momelotinib & What They Do For PMF

A myMPNteam Member asked a question 💭
Farmington,N.M

What Are People Paying For Jakafi

A myMPNteam Member asked a question 💭
Marco Island, FL
Continue with Facebook
Continue with Google
Lock Icon Your privacy is our priority. By continuing, you accept our Terms of Use, and our Health Data and Privacy policies.
Already a Member? Log in