Besremi One Year Update

[Elizka]

Hi all,

I've got my first Besremi injection on January 27, 2022.

As I've shared before, currently no issues with the drug, but early on an uptick in migraine frequency until I got on CGRP inhibitors.

My current dose is 150mg.

Recent blood work (image attached) showed my WBC lower than the desired range for the first time. HCT still not controlled by Besremi so I will schedule a phlebotomy next month, but I have been able to have fewer than before starting Besremi. As a result, I do have some iron in my body.

CMP was all within normal ranges.

And finally, my recent JAK2 allele test shows a small decrease in the % of allele burden.

It was 56.18 right after I started Besremi and is now 51.89. I was hoping for more improvement, but as Hunter said" It is moving in the right direction."

[hunter5582]

Glad to hear the good news. Any change in the right direction for VAF is a good thing and much better than an increase. Needing the occasional phlebotomy is also much better than needing them more frequently. It really is a balancing act to get it just right for each of us.

Wishing you all the best.

[ainslie]

those counts look okay, it may take longer to get complete control, I know Peg can take up to 2 years, also your Hct looks okay as it is for the moment?

[Pat032018]

On my post not too long ago, I mentioned that my WBC, RBC, HGB, and HCT were all below normal range after 11 months. I guess titration of Besremi will always be a task after it had suppress many of the high counts as shown by the results of my CBC test.

[Danzie89]

I’ve also been on Besremi for exactly one year with similar results! Also low WBC but in range for everything else. Was up to 400mcg at one point and now down to 200mcg every two weeks. So glad to hear about your success.

Blood work from December 2022

[RyanCB in reply to Danzie89]

Hi - I have been diagnosed with PV/JAK2 since 2018. Went through phlebotomies, Hydroxyurea and then onto Jakafi. Then in Nov 2022, Johns Hopkins MPN specialist recommended switching to interferons. I am currently going through the initial titration phase with Besremi. Started in Dec at 100mcg and am currently at 300mcg but my PLT are still extremely high at 1209 as of yesterday... I weigh ~215lbs and I am hoping that I just haven't gotten to the right dosage level for my body weight. I am set to go to 350mcg on Monday.

How long were you at 400mcg of interferon before it started working?

This titration phase is taking much longer than I was anticipating.

[Danzie89]

More results

Blood work

[DiveGoddess]

Congrats on a successful year! Hopefully your allele will continue to decrease.

[KLCTJC]

Great news! I get started tomorrow. Never thought I would be excited to start a medicine!

[MrsBerri]

That is great news! Why the phlebotomy? Your HCT looks within range. What am I missing?

[mfh7]

Thanks for sharing. I too have been on Besremi for about a year. Still needing phlebotomy but not as often so I feel better since iron has improved. Sounds similar to your experience in that regard. However my doc has slowly increased the dose to try and get a better response and I am now at the max dose of 500 mcg every two weeks. All of my labs have improved except hct/red counts which are stubborn so far. Hoping the Besremi does its job on the hct eventually. I have seen several references saying it can take well over a year to take effect on hct. I have not had another BMB since the pre Besremi baseline of 40% so don’t know that effect yet. Hoping the Besremi kicks in for both us to eliminate phlebotomy eventually but overall I think it’s been a net positive so far in terms of most of my labs and quality of life. Five years of phlebotomy prior to Besremi was taking its toll and I am glad to be doing something proactive for my allele burden. It’s an educated guess on my part but i suspect that how each individual responds to Besremi is somewhat dependent on which genes in addition to jak-2 are mutated. I also have a minor asxl1 10% mutation but don’t fully understand the significance of that in terms of Besremi response and I don’t think our docs do either yet. There are studies showing a higher likelihood of progression with certain extra mutations but nothing definitive.

Best of luck and please keep us advised regarding your progress.

[RyanCB in reply to mfh7]

See my response above. I was getting nervous that I am currently at 300mcg Besremi and still not seeing an improvement in PLT counts. Seeing that you are at 500mcg for an extended period of time makes me feel a bit better. MPN Dr at Johns Hopkins ran some other tests for other mutations and they were negative besides JAK2. Not sure why/when my PLT will start to come down...

[mfh7 in reply to RyanCB]

my doc said in the studies that led to approval of Besremi everyone was at 500 mcgs eventually if I am recalling correctly. Of course if you get your labs controlled with a lower dose amount that’s the way to go. I don’t think body weight has anything to do with it. Seems like people can either tolerate it or not depending on variables that are not yet understood. My platelets started going down significantly and immediately on Besremi but I was at 1500 when I started caused by five years of phlebotomies. It’s the hct control that has not kicked in for me. It can apparently take up to two years or more for some and others get control at 100 mcgs within months. They don’t know why. The working theories appear to be degree of allele burden or mutation profile but those issues are yet to be determined based on my understanding. Be patient with it unless you are having adverse effects. It is well documented that it can take a while for Besremi to take effect. Best of luck!

[RyanCB in reply to mfh7]

Yeah my PLTs were ~1300 or so when I started Besremi so I figure it is going to take awhile to get to a dosage that will start to bring them down. I do wonder if I had stayed on Jakafi until my PLT were lower if it would have been easier switching to Besremi. I made the switch due to MPN specialist's recommendation for longer term complete blood control, etc... but meanwhile my PLTs are sky high. Fortunately I am not have too bad of side effects with the PLTs or Besremi. Initially on Besremi I had some higher anxiety/aggitation but they have, fortunately, subsided.

[MrsBerri]

Good to hear things are going in the right direction. I did a CBC today and my HCT is going up! Yes, I'm discouraged. I increased my Besremi dose to 200 mg last week. I guess I will 'look forward' to the phlebotomy next week and get my water intake increased. Thanks for sharing your journey; makes me have hope.