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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

eferret | @eferret | Feb 4 1:12pm

In reply to @eferret "The support people at Onco360 pharmacy told me that Besremi can withstand temperatures of up to..." + (show)

I wanted to clarify that Besremi can be kept at room temperature for up to 7 hours, but generally speaking it should be kept cool.
I am going to Hawaii for a few days and then on a 10 day cruise, and I don't want to bother taking the Besremi with me because we will not have a refrigerator on our trip and I don't want to have to carry a medical cooler. So it will be 3 weeks between injections. My last hematocrit was under 41, so hopefully it will be ok.

garyintlv | @garyintlv | Feb 21 10:16am

I have been taking Besremi for one year. I was hoping the side effects of dry mouth and affected sleep would decrease. I have got used to the dry mouth but the sleeplessness seems to be worse. Some nights I fall soundly asleep and then wake up after 1h45 and it takes me hours to fall asleep again, if at all. Other nights I can't fall asleep and end up sleeping 2-5 hours. I don't like taking anything but last night took a zolpidem tartrate tablet at 1030pm and was still awake at 0200am. I ended up sleeping 7h30. I have used melatonin but it hasn't worked.
Does anyone else have this issue?

sdduan | @sdduan | Apr 5 12:05pm

In reply to @sunshine1983 "Hi, I have Triple Negative ET. I am only 42 years old and my symptoms started..." + (show)

@sunshine1983 Thanks for sharing your story. I am also triple negative and started taking Besremi 200mcg every two week. It seems vey effective and I am very happy as I did not respond to HU well in about 2 years treatment with HU. Keep fingers crossed!

garyintlv | @garyintlv | May 23 4:46am

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.

alikay | @alikay | May 24 6:15am

In reply to @eferret "I wanted to clarify that Besremi can be kept at room temperature for up to 7..." + (show)

@eferret most cruise ships have to provide you with a refrigerator for medical supplies without cost to you. Let them know ahead of time.

cariadk | @cariadk | May 24 7:21am

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

@garyintlv
Besremi has been successful for me although I had to go up to 400 before it had impact. I am stabilized now and my dose has been reduced to 200. I did have a couple of spikes on my liver (AST and ALT) but they have gone down again. Please keep us posted on your results. I hope it normalizes soon.

mdramsey48 | @mdramsey48 | May 24 8:43pm

In reply to @sdduan "@sunshine1983 Thanks for sharing your story. I am also triple negative and started taking Besremi 200mcg..." + (show)

@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?

garyintlv | @garyintlv | May 25 12:12am

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.

sdduan | @sdduan | May 25 9:31am

In reply to @mdramsey48 "@sdduan Question: I started HU and after 30 days I experienced extreme flu like symptoms, and..." + (show)

@mdramsey48 For me, the main issue is that my platelet counts did not come down even w/ 1000mg/day (still at ~700000). And fatigue and longer recovery time after work out is another issue.

mdramsey48 | @mdramsey48 | May 25 10:08am

In reply to @sdduan "@mdramsey48 For me, the main issue is that my platelet counts did not come down even..." + (show)

@sdduan Oh I have fatigue all right. Daily. I can usually make it to the gym and feel good after a workout for a while. But you are right, recovery is definitely longer

Please sign in or register to post a reply.