1. < Blood Cancers & Disorders

Essential Thrombocythemia treatment with Besremi

Posted by garyintlv @garyintlv, Jan 28 11:04am

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 | Jan 29 7:17am

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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1 reply
nohrt4me | @nohrt4me | Jan 29 8:31am

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.

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garyintlv | @garyintlv | Jan 29 9:53am
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?

Jump to this post

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

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nohrt4me | @nohrt4me | Jan 30 8:33am

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 | Feb 3 11:19am

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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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 9 5:09pm

@garyintlv, you may also be interested in the experiences shared in these related posts about Besrimi: https://connect.mayoclinic.org/search/?search=Besrimi%20

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1 reply
smyles73 | @smyles73 | Feb 11 8:13pm

I’ve been taking Hydroxyurea for 3 years or more for very high platelets 800 to 990 and still dealing with this issue today. I go every two weeks for blood test M-W-F-S 1500 mg and T-T-S 1500 mg diagnoses said I have Essential Thrombocytosis and Jake 2 present. What could be causing this to continue with all this medication I take. I still be tired and I just fall asleep within seconds. Advice please or do I need a 2nd opinion?

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1 reply
mdterp76 | @mdterp76 | Feb 11 10:01pm

Are you seeing an MPN specialist and hematologist. If not, consider seeing an MPN specialist.
Take care!

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Mentor
Lori, Volunteer Mentor | @loribmt | Feb 12 8:42am
In reply to @smyles73 "I’ve been taking Hydroxyurea for 3 years or more for very high platelets 800 to 990..." + (show)
@smyles73

I’ve been taking Hydroxyurea for 3 years or more for very high platelets 800 to 990 and still dealing with this issue today. I go every two weeks for blood test M-W-F-S 1500 mg and T-T-S 1500 mg diagnoses said I have Essential Thrombocytosis and Jake 2 present. What could be causing this to continue with all this medication I take. I still be tired and I just fall asleep within seconds. Advice please or do I need a 2nd opinion?

Jump to this post

Welcome to Connect, @smyles73. You were diagnosed 3 years ago with ET and taking 1500 mg of Hydroxurea daily since then. From what you’re saying is that the blood numbers are still as elevated? I agree with @mdterp76, it’s time for a 2nd opinion with a hematologist oncologist who specializes in MPN (myeloproliferative neoplasms).

ET and several other blood conditions are associated with MPNs. These disease can change or progress over time. If your current medication isn’t working it may be time for a few more tests to confirm the original diagnosis.

This is a pretty comprehensive informational article about MPNs from Cleveland Clinic that might be helpful for you to read.
https://my.clevelandclinic.org/health/diseases/24144-myeloproliferative-neoplasms
Have you ever had a bone marrow biopsy?

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