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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)
Profile picture for garyintlv @garyintlv

I have a dry mouth and my sleep is affected from time to time. Some nights I have trouble falling asleep and sometimes I fall asleep but woke up 1.5-2 hours later and then am awake for an hour os so before I can fall asleep again. It is not continuous but comes and goes. I don't stress about it, just read my book until I am ready to sleep.

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@garyintlv that happens to me too

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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!!

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garyintlv | @garyintlv | 1 day ago
In reply to @garyintlv "It was a year in March since I started Besremi and it worked a charm. Unfortunately..." + (show)
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It was a year in March since I started Besremi and it worked a charm. Unfortunately my last blood test showed it is affecting my liver, common in 20% of patients according to my hematologist.

I am now having a weekly blood test to monitor my liver and will be taking half the dose of Besremi I was on, so down to 50mcg. My doctor said that once my liver levels are back to normal, we will slowly increase the dose and that perhaps 70 or 80mcg will be the right dose for me.

Fingers crossed as I really don't want to change from Besremi.

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@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.

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cariadk | @cariadk | 5 hours ago
In reply to @garyintlv "@garyintlv Unfortunately my liver levels decreased at a slower rate than they should have. My hematologist..." + (show)
Profile picture for garyintlv @garyintlv

@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.

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

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garyintlv | @garyintlv | 2 hours ago
In reply to @cariadk "@garyintlv oh no. Im sorry to hear that. Hope the liver values resolve themselves. How high..." + (show)
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@garyintlv oh no. Im sorry to hear that. Hope the liver values resolve themselves.
How high were your liver values

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@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.

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