Essential Thrombocythemia treatment with Besremi

Posted by garyintlv @garyintlv, Jan 28, 2025

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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cariadk | @cariadk | May 26 7:22am

In reply to @garyintlv "I have a dry mouth and my sleep is affected from time to time. Some nights..." + (show)

@garyintlv that happens to me too

conniekostiuk | @conniekostiuk | May 26 7:46am

I have just had my 7th Besremi injection. I worked with Besremi directly when trying to get the medicine. You may want to contact them. They told me that they are working on a possible refrigeration solution themselves. I may buy this one you have here. I can't do anything for longer than 2 weeks at a time away from home. Look them up...Pharma Essentia manufacturers Besremi. FYI..side effects ok for now!!

garyintlv | @garyintlv | Jul 9 8:03am

In reply to @garyintlv "It was a year in March since I started Besremi and it worked a charm. Unfortunately..." + (show)

@garyintlv

Unfortunately my liver levels decreased at a slower rate than they should have.
My hematologist told me to stop the Besremi and have an ultrasound scan and further blood tests before I see him again next week.

cariadk | @cariadk | Jul 10 6:31am

In reply to @garyintlv "@garyintlv Unfortunately my liver levels decreased at a slower rate than they should have. My hematologist..." + (show)

@garyintlv oh no. Im sorry to hear that. Hope the liver values resolve themselves.
How high were your liver values

garyintlv | @garyintlv | Jul 10 8:53am

In reply to @cariadk "@garyintlv oh no. Im sorry to hear that. Hope the liver values resolve themselves. How high..." + (show)

@cariadk
ALT(GPT) was 166.
AST(GOT) was 102.

The values came down when I reduced the Besremi from 100 to 50mcg but the hematologist was not satisfied with the slow rate at which they reduced.
I'll see what he says next week.

cariadk | @cariadk | Jul 11 6:07am

In reply to @garyintlv "@cariadk ALT(GPT) was 166. AST(GOT) was 102. The values came down when I reduced the Besremi..." + (show)

@garyintlv
My current values are
Ast 94
Alt 85
My hematologist does not seem concerned. My dose is at 200 and my platelets have crept up again to 563.

garyintlv | @garyintlv | Jul 17 4:55am

In reply to @garyintlv "@garyintlv Unfortunately my liver levels decreased at a slower rate than they should have. My hematologist..." + (show)

@garyintlv
My ultrasound indicated fatty liver (I do not drink alcohol) and despite stopping Besremi three weeks ago, my liver results were worse.
My hematologist is sure that it is not the Besremi causing the issues, nevertheless I cannot restart until the liver issue is resolved.

He has referred me to a major hospital for an appointment with a hepatologist as soon as possible and warned me I may have to have a liver biopsy. Yipee.

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