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Essential Thrombocythemia treatment with Besremi

Posted by garyintlv @garyintlv, 6 days ago

At my last appointment with my haematologist 2 weeks ago, he gave me the choice of starting HU or Besremi injections every two weeks. After we discussed the pros/cons I decided to go with the Besremi but had to get approval from my health fund which I received today.

I am away overseas and will see my family doctor when I return to get referrals for ECG, blood tests etc..
I will have to go to the health fund clinic for the first 2 injections under supervision but after that I do it myself. It will be a bit of a pain travelling with the injections because they need to be kept 2-8°C (36-46°F). I am thinking of investing in this: https://4allfamily.com/products/portable-medical-fridge-usb-insulin-medicines (any better ideas welcomed).
https://pubmed.ncbi.nlm.nih.gov/38438627/
I will report back after I start the Besremi.

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Mentor
Lori, Volunteer Mentor | @loribmt | 5 days ago

Hi @garyintlv, Traveling with meds that require refrigeration is a challenge! A good friend of mine has diabetes and hesitates to plan for trips involving air travel because of her insulin requirements. So I was curious about link you posted for the portable fridge cooler! This is pretty cool little gadget! (Could’ve resist the pun). But this could be a game changer for med transport. And it’s TSA compliant!
Thanks for sharing the link and best wishes for continued good health. When do you return to the states?

REPLY
1 reply
nohrt4me | @nohrt4me | 5 days ago

Glad you were able to get approval for Besremi. Please let us know how you're doing over time! As a longtime ET patient, always good to know how patients are doing on the newer drugs. Smooth sailing ahead for you, I hope.

REPLY
garyintlv | @garyintlv | 5 days ago
In reply to @loribmt "Hi @garyintlv, Traveling with meds that require refrigeration is a challenge! A good friend of mine..." + (show)
@loribmt

Hi @garyintlv, Traveling with meds that require refrigeration is a challenge! A good friend of mine has diabetes and hesitates to plan for trips involving air travel because of her insulin requirements. So I was curious about link you posted for the portable fridge cooler! This is pretty cool little gadget! (Could’ve resist the pun). But this could be a game changer for med transport. And it’s TSA compliant!
Thanks for sharing the link and best wishes for continued good health. When do you return to the states?

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I don’t live in the US though I shall be in New York City next month.

REPLY
nohrt4me | @nohrt4me | 4 days ago

I figured you are not in the U.S. Besremi costs about $180k per year here, and getting insurance to cover that is rare, since it's still off-label for ET.

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preacherswife1977 | @preacherswife1977 | 5 hours ago

I have been on Besrimi for a few months now and am having no side effects. They have been upping the dosage by 50 every month. I started out at 50 and now I am up to 400. I received a grant from the Specialty Pharmacy otherwise I could not have gotten the injections. 2 injections are $17,000. Best to you

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