2nd Dose of Besremi Today

[MrsBerri]

Hi,

2 weeks ago, I had my first injection of 100 mg of Besremi. I had a CBC done and my numbers were 'normal' HCT 42.5 and platelets 380; best I had seen in years. Talked to my specialist and she suggested I go up to 150mg this time. I was hesitant because I thought if 100mg worked to reduce counts, why go up? She couldn't tell if the counts were due to the Besremi or the phlebotomy I had also done on the same day as the first injection.

This morning, I gave myself an injection of 150. Feel a bit light-headed and have a 'taste' in my mouth. The injection site, on my thigh, had a bit of blood too. Very different experience than the first time. I will get my CBC on 1/18 and see if there is any impact.

[GardNerd]

Greetings! It will be interesting to see what the next CBC shows for sure. I also had a phlebotomy early in my Besremi experience, and I felt like that made it more difficult to know what the Besremi was doing. But it's not uncommon to need a few phlebotomies while the Besremi is taking its time to work.

In my experience, Besremi took some time to lower the numbers. It seemed to stabilize things pretty quickly, and then it was clearly working about 4 months in. That's when I really started to see significant reductions into the normal range for most of the CBC components.

Since I was tolerating the Besremi reasonably well, my doctor kept increasing it by 50 every two weeks. I'm now at 500, and he's going to start reducing it to get to the dose that will keep things in order.

I get little spots of blood at my injection site now and then, but it doesn't last long.

I hope you continue to feel pretty well on Besremi and that it keeps working for you!

[Elizka in reply to GardNerd]

Yes, it takes time. Next month, it will be a year that I have been on Besremi. No issues at this point, and my WBC and PLT are normal. My HCT does ick back up over time above 42 (my target range) so I get a PHL as needed.

[Elizka]

I started at 50mg, and moved up to 100 over three months or so. I'm at 150, but I took a few months to get there to watch for adverse events.

[hunter5582]

Sounds like you are on the right path. It is harder to tell with a recent phlebotomy exactly what the Besremi is doing. Note that while the phlebotomy would make HCT go down, it can make the PLT go up. It will take time, at least several months, to see what is really going on. Many of us on the forum have taken it slow in increasing the dose. If that is your preference, just work with your care team about the pace of dose changes.

Wishing you success.

[EPguy]

As Hunter says, with the phlebotomy your HCT may not reflect the effect of the Bes. But if your PLT went down a lot in two weeks to a new low level that shows the Bes is really working well at least in some way.

I have the same dissonance with my Dr since the start, if all the important bloods are good (CHR) why keep upping it. I've posted before that the researchers haven't found a molecular benefit of doses higher than required for CHR. Molecular (MR) is getting our Jak2 or other mutation reduced, which interferon can do.

On the blood, it seems random, but I understand if we hit a small blood vessel it will briefly bleed. Mine clears in minutes when that happens. But I've had a couple dull needles with the ones that come with Bes, so I use ones from Dr's office.

[Hopetohelp]

I am never sure why they always want to up the dose so quickly of any of our medications. A slow increase to let our bodies adjust makes more sense to me

[EPguy in reply to Hopetohelp]

I finally got a lid on mine via low WBCs, Dr wants to hold it there. (140)

[C_Anne_Orange]

Hello - we are on a similar path. I had my first Besremi injection on December 29, 2022 and will have my second one tonight. I have been on aspirin and Hydroxyurea for the past year so they started my Besremi at 50 and I'll go to 100 tonight. They suggested I do the injection before bed. I haven't had any reactions from the first low dose , but my last phlebotomy was in October and my HCT before the injection was 42.6 and on 1/9/23 it went to 45.2 so I think I'm due for a phlebotomy, Based on what others have said on this forum I expect the Besremi to take a while to kick in. It's so helpful to hear other's responses and experiences. It gives us all better context and ideas on what to expect. Very best wishes for a good response to our new Besremi! I'll look forward to hearing more about your progress.

[MrsBerri]

Good luck with everything! My wish is no more phlebotomies someday. Let us know how you do with tonight's injection!

[Wyebird]

not being medically trained I suppose I can’t judge and I have ET but a 50% dose increase to me seems drastic.

Hope all works out well for you

[MrsBerri in reply to Wyebird]

50% would be drastic! I increase by 50 ccs (I think), which was pretty minimal. I am at 150 out of 500 (the full dose)

[Wyebird]

did you have favourable blood results. I noticed you had a blood test on the 18th. When in clinic my results come through straight away.

[MrsBerri in reply to Wyebird]

Hi. Yes I did! I posted my results a few days ago. Very good results.

[Wyebird]

oh I missed them. Thrilled for you. So what dose now?

[MrsBerri in reply to Wyebird]

My next dose will be at 150 and we will see what the outcome is.

[Wyebird in reply to MrsBerri]

agh yes that’s the one I was querying. Why put up the dose so much if your results were so good ? Keep us posted