BESREMi anyone?

@nancyra
In April started me on 50 and moved up 50 every week. Until a month ago I was at 350 and he jumped me to 500. My side effects got worse so we went down to 400 last week. I'm still having muscle cramps and all the other side effects. I'm thinking very seriously about getting off. And I'm still on hydroxy.

@csrb7007 I was thinking the same thing that as I was on the drug a little longer it might get better. But my side effects have gotten worse. I am normally very active as well but my quality of life has gone down. And I'm about ready to give up. Since I have a lot of problems with skin cancer the only other two drugs have the side effect of skin cancer but I think maybe that's not as bad as the side effects I'm having with this drug.

@pfscheyer I’m sorry to hear about your struggles with Besremi. From everything I have read, we don’t have many alternatives to Hydroxyurea and Besremi. And for me, if I’m going to feel like poop with a medicine, I’ll choose the one the has a possibility of putting the disease in remission.

Best of luck.

@pfscheyer
Thanks for sharing that info.
Was approved for the syringe but I wanted the pen so still waiting to start. So you had muscle cramps as you went up in dose and what other side effects?

I would be interested in why I have heard that Besremi is not proven to reduce the Jak2 burden. And that it’s better to stay on HU if things are going well. My newdoctor is following that Mayo hematologist’s opinion. I struggled to gain access to the drug and paid $1800 co pay to get it. My prior hem oc doctor suggested Besremi because my JAK 2 had gone from 15% to 68% in 6 yrs. Anyone heard of this theory on Besremi?

hi all, today 8/31 FDA just approved Besremi for ET treatment (any ET type). Patients who haven't received any cytoreductive therapy like HU can access too. This will certainly help on insurance side. I encountered a lot of troubles when my hematologist prescribed Besremi. My insurance initially did not authorize it as it was not approved by FDA yet. It took quite documentation and convincing before I got Besremi. The news link: https://www.fiercepharma.com/pharma/cusp-pharmaessentia-gains-fda-label-expansion-besremi
Just wanted to share with the group.
My personal experience: I started Besremi treatment Feb 2026 after I was not responding to HU well. The platelet count has been decreasing and now within the normal range. Still battling some side effects like low HGB,low WBC, etc. In general much better than HU.

Hi @mcsulli There are numerous reports released, including from PubMed, regarding the studies on Besremi to treat Myeloproliferative disorders, such as PV and ET, where the JAK2 mutated gene is involved.

Besremi was initially approved for PV in November 2021 citing the outcome of the study which showed patients treated with ropeginterferon alfa-2b (Besremi) showed durable hematologic responses and reductions in JAK2 V617F allele burden compared with those receiving hydroxyurea or best available therapy. The trials demonstrated a reduction in JAK2 allele burden, a surrogate marker associated with lower risk of thrombosis and disease progression over time. In PV the mutated JAK2 gene is responsible for the over production of red blood cells.

Similar results were shown for the reduction in the JAK2 burden for patients with ET (essential thrombocythemia where mutation was causing the production of too many platelets.

This article from Medfinder summed up the information in an easy manner:
>How does Besremi work
https://www.medfinder.com/blog/how-does-besremi-work-mechanism-of-action-explained
Links to articles on the reduction in allele burden of the JAK2 mutation:
>Targeted Oncology:
https://www.targetedonc.com/view/ropeginterferon-alfa-shows-disease-modifying-potential-in-polycythemia-vera
>PubMed “ Long-term outcomes of polycythemia vera patients treated with Interferon alfa not only restores normal blood cell counts in patients with polycythemia vera (PV) but can diminish the mutant JAK2 V617F allele burden.”

From this article in PubMed
https://pmc.ncbi.nlm.nih.gov/articles/PMC9061291/
I’m only tossing these articles out here for information. This are options to discuss with your doctor. This may not be an option for everyone or even warranted if HU is doing the job.

I wonder about the long term build up of HU side effects. I know someone who has been on it for 10 yrs. He has several significant issues but when he inquired about Besremi with his doctor he was told “if it ain’t broken don’t fix it”. So though he has occasional phlebs and taking 1500 mg/day, he is going to stay as is. Hands are purple and peeling skin, his cheeks are purple and he needs naps every day. I’m not sure I want to opt for waiting to see side effects until I make a move.

Started Besremi yesterday
ET - calr type 2
68 yr old female
Diagnosed 29 years ago.
Have take HU and Anagrelide so can answer questions about both
Platelets currently 1290 - have been off Anagrelide for 8 weeks so they spiked
My Hem is starting me at 50 mcg
He is not of the mind that he needs to drop numbers quickly- more concerned with easing into a new drug and I’m good with that cause if a drug has side effects- I get them.
Currently on Eliquis and metropolol (for afib) as well. The Eliquis is keeping the stroke and clot potential down for now. ❤️