Positive Experiences with Besremi in CALR mutated MPNs?
Hello Guys,
I am 26/m and I was diagnosed with Pre - PMF (CALR 1) earlier This year. My doctor immediately suggested prescribing an Interferon but after the BMB came back as Pre - PMF that would require special approval by my insurance. Due to some stupid errors the request took longer than expected and was denied.
The thing is, the insurance statement was not that bad, they essentially asked my doctor to explain, why JAKi (which are approved) are not prescribed first. My doctor and a collegue are currently preparing statements in this regard and I am somewhat confident, that I could get my insurance to approve Besremi.
Now because of the mentioned delay I had alot of time to research my options and I am not sure anymore if I even want to go on Besremi. I know it has the best evidence for slowing disease progression but there is a good chance that JAKi can also slow down the disease, at least slightly and offer a sideeffect profile that seems much more tolerable to me. I also discovered that most of the Interferon Data for CALR was a lot less encouraging than for JAK2, usually needing a much higher dosage to respond and usually a much weaker molecular response.
The „gameplan“ my doctor laid out, pretty much entails bridging a few years on Interferon and then switching to the antibodies when they are approved (or through joining a trial, which she is already monitoring) and with the idea in mind that we are only talking about a few years here, I could justify not taking disease modifying medication for now. I talked my concerns over with my doctor and she explained to me, that she had many patients with CALR that did respond well but that does not really convince me. I also keep reading more and more patient stories of people who really suffered under Besremi (mostly that life just feels dull and joyless) and that is something I am not willing to risk with the upside being possibly very limited in my case.
But since both my doctors seem to agree that an Interferon would be the obvious best choice and because my family still puts alot of hope on Interferons, I will probably fight for the insurance approval.
For that reason I would really like some encourangement and would be happy if some people could share their positve experiences with Interferons. I would especially like to hear stories of CALR positive patients, so that maybe I could losse some of my doubts.
Thank you for your answers and sorry for rambling - I kinda sorted my thoughts as I wrote.