Besremi

[WIL2US]

Hi I have been on besremi for 18 months and my hematocrit is finally becoming controlled. Has anyone gone down to monthly shots? Has anyone been able to track their mutation frequency?

[PupsBestFriends]

Hi WIL2US,

Congratulations getting your HCT controlled in 18 months. Some struggle much longer before achieving good results.

I have been on Besremi since September of 2022. I began twice monthly injections starting at 50mcg and increasing 50mcg each injection until I reached 500mcg. In May of 2023 my HCT and platelets reached acceptable levels. In January 2024 my levels were still controlled and I reduced injections to 500mcg once monthly. In April 2024 I reduced my monthly injection to 400mcg which is where I remain.

My allele burden was 33% in May of 2022, before starting Besremi. In April of 2024 it had reduced to 22%.

[hunter5582]

I quickly achieved hematologic control at a relatively low dose of Besremi. My JAK2 VAF reduced from 38% to 9% after 18 months. One year later it was at 10%. I will be checking again on December 2.

[SoledadBarcelona in reply to hunter5582]

Why do you think the VAF is increasing?

[hunter5582 in reply to SoledadBarcelona]

I think that the VAF has plateaued and that the 1% difference is likely within the margin of error. We will see after I repeat the lab on December 2.

[WIL2US in reply to hunter5582]

Wow thats wonderful. I was a little disappointed during the first year but now I'm so happy it seems to be on track.

[Jomalile]

hi! That is a nice result! what is the dose you had during the 18 months? Was it raised and what is the dose now you reached this results?

[WIL2US in reply to Jomalile]

Hi I have been on 500 for well over a year. I get my mutation frequency checked frequently. I'm hoping to go monthly at some point.

[WIL2US in reply to Jomalile]

I am at 500. Started at 50 with hydroxyurea and then phlabotomy. No phlabotomy since Aug.

[Luthorville]

I get my allele burden (mutation frequency) once a year. I've been on besremi for almost the same amount of time as you and have had outstanding platelet control, but HCT has remained more stubborn. Full disclosure though, I did not reach 500 mcg of Besremi until June 2024, over a full year after I started Besremi. I was having a good response at lower levels, so the docs kept me in the 300-400 range. I've now been at 500 for about 24 weeks and there are indications that HCT may stabilize, but it hasn't happened yet. Once it does, the plan would be similar to that from PupsBest. My allele burden has remained between 14 and 15 for the 3 times it has been tested by both blood and BMB tests.

[SoledadBarcelona in reply to Luthorville]

Why the allelo burden is changing? Do you know anything about it? I didnt read any paper about this issue. Thanks

[WIL2US in reply to SoledadBarcelona]

I believe it is the besremi. I'm hoping it continues. It is currently decreasing by 2% a month.

[Luthorville in reply to SoledadBarcelona]

The allele burden is considered an indicator of the disease progression. So the preference is for this number to decline while taking Bresremi as it has shown the ability to reduce it.

[WIL2US in reply to Luthorville]

Do you have ET or PV? I understand ET has a much lower allele burden. Hope your HCT stabilizes.

[Luthorville]

PV for me

[WIL2US]

You AB is so low. When I was first diagnosed I was around 32. I didn't realize that other PV patients had low AB amounts.

[Jomalile in reply to WIL2US]

I hope my AB will go down now with Besremi. It is 68%. That is pretty high, I think.

[WIL2US in reply to Jomalile]

Mine was around 59. Now down to 30.

[EPguy in reply to WIL2US]

I was at 14% in blood at PV Dx. My PV had ET like features, that might be related to the low value. Bes halved the AB in 11 months till I had to quit.

[Ovidess]

I've been on Bes for about almost two years, but only 18 months total as I had a medication vacation for my liver after reaching my 300mg dose. When my liver recovered, I went on 100 mg 2X a monthl, and this year, after my HCT showed complete normality and my platelets hovering above and below 400,000, I began a 1X a month dose of 50 mcg. (Side effects though not liver problems motivated this early reduction in dose.) I will be checked in December again to see how the counts are holding. Now that I know that I can have my allele burden checked with blood instead of painful bone digging, I will ask if I can see if my AB has dropped from 38% at diagnosis.

[WIL2US]

That's wonderful! Hope to go to 1 x a month also.