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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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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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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Profile picture for garyintlv @garyintlv

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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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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Profile picture for cariadk @cariadk

@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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Profile picture for garyintlv @garyintlv

@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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@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.

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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
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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I saw the hepatologist. He told me that according to the rule of thumb, enzyme elevations up to three times the normal level are acceptable. Besremi causes elevated liver enzymes in 20% of patients.
He sent me for a Fibroscan and some additional blood tests and subsequently confirmed I am ok to restart Besremi but needed to make sure my enzyme levels remain under three times the normal level (so 37x3=111).

I contacted my hematologist who usually responds immediately. I have not heard from him so I assume he is away on holidays. I have an appointment to see him in October (he attends a lot of conferences too and was not available before then).
In the meantime, based on what he told me at my last appointment, I have restarted Besremi at 50mcg.
He said we will increase it gradually and that he hoped a dose of 70 or 80mcg will keep the platelets within range and enzymes below the maximum recommended by the hepatologist.

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Haven't heard of besremi as a drug for ET.
Hope all goes well with the enzymes.

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Profile picture for mdramsey48 @mdramsey48

@sdduan Question: I started HU and after
30 days I experienced extreme flu like symptoms, and when I say extreme I mean EXTREME. I never want to look at that stuff again. I initially wanted to try Besremi due to my symptoms from Jak2+ET but due to my reaction to HU, I am starting an anagrelide. What side effects have you experienced?

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@mdramsey48 sorry for the late reply as I was travelling in summer. The side effects I had from Besremi include itchy scalp and skin, lower WBC and Hgb. But now it seems both are improving overtime while platelet counts are well within the acceptable range.

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