Essential Thrombocythemia treatment with Besremi

You can find a Travel Letter here: https://www.besremi.com/tools-and-resources/
that your doctor can complete, preferably as close to departure as possible.
You need to inform the official at the front of the security check that you need the Besremi to be hand checked and not X-rayed.
https://www.tsa.gov/travel/tsa-cares/disabilities-and-medical-conditions go to Medications.

I was under the impression that a cold pack had to be completely frozen and if it was partly thawed it would not be allowed. the link above contradicts this.

As anybody who travels frequently knows, every airport has its' own rules. I have been told one thing going through Frankfurt Airport security and another going through Munich. VERY frustrating.

That’s really helpful. I travel in an rv and the fridge can fluctuate.

Are you that are on Besrimi experiencing any hair loss. I am getting pretty thin on top. If so what did you do?

I have been 'thin on top' for years and take finasteride.

I saw my haematologist today.
My platelets are well within normal range after taking 100mcg Besremi once every two weeks for 5 months.
Two days after my injection I feel a bit 'ordinary/dizzy' and have a headache. Other than that and dry mouth, I am fine.
It is not a big deal and a small price to pay. Very grateful.

I’ve had 3 doses. Platelets are high 1346. Just increased dose to 100mcg. This last shot I felt sick and got a metallic taste but I did it at night as you advised so just went to bed and have felt fine except for short-lived headaches. I hope the increased dose has more impact.

Good morning, I wanted to share my positive experience with Besremi in case it is helpful for others. My mutation is the MPL exon 10 mutation. I have exceeded the platelet range since February of 2018. My numbers hit over a million in March of 2025 despite years of trying to bring my numbers down naturally with diet, exercise, acupuncture, etc. . I started Besremi on July 2, 2025. 2 weeks later, my numbers were 689 at a dose of 100, My dose was increased to 150 and 2 weeks later my numbers were 476. My dose was increased to 200 and 2 weeks later my numbers were in range at 351. I am now staying at a dose of 200. I have been making my own yogurt which includes a couple of strains that had the potential to induce IFN-y, IL-12 production, TH1 cytokines, NK activity and interferon signaling and TH1 balance (probiotic strains: L reuteri, L plantarum, L rhamnosus, L paracasei & B. longum). I don't know if that helped, but it may have. I also have been injesting daily garlic, dandelion root, ginger and tumeric root and am on a mostly vegan diet (except my homemade yogurt and some eggs) and exercise daily. I have no other underlying health conditions except hypothyrodism. I appreciate all who have shared on this forum and hope that my story is helpful for others.

My platelets initial dropped substantially from 1400 to 842 then went to 750 at 100 then it went back up to 860 so I’m on a dose of 150 now. Side effects have been minimal. Scratchy throat. The day after my shot I am pretty tired but then feel good except for the scratchy throat. Keeping my fingers crossed that this does the trick.

Glad to hear that the Besremi is working for folks! Anyone getting depression as a side effect? This was the major reason that Pegasys, the interferon used before besremi, was not recommended as the first treatment of choice, especially those over 60.

A Patient Power video dropped in my email a couple weeks ago where Dr Verstovsek (MPN expert) said he still sees hydroxyurea as first-line treatment for most people with ET and myelofibrosis.

But the first-line treatment doesn't work for everyone as many here have illustrated. I do appreciate reports from the front lines for those using Besremi.

This is very helpful! I am waiting to finally stop taking hydroxyuea after being on it for 30 years this gives me hope thank you. 🙏