Essential Thrombocythemia treatment with Besremi

Good luck with the Besremi. I have been taking it for about a year and a half now and it’s literally stopped disease progression. I was positive for JAK2 mutation about 5 yrs ago…. My WBC and platelets are now normal. Only my RBC is still high but NOTHING like it was before, and it’s been creeping down since first month of treatment with Besremi. I do the bi weekly injection at only 150mcg (I believe less is more!) and still get periodic phlebotomies as well at only 300ccs instead of the standard 500 due to severe iron depletion. Both treatments seem to keep the disease at bay which is what I was aiming for with any treatment - I refused intake the oral chemo meds, and when my plates rose to over 900 my hematologist told me I needed to make a decision as to what treatment I would do ASAP.
So far so good on the Besremi. The only thing I don’t like is that it can exacerbate some auto immune disorders: I have had a very mild case of Raynard’s syndrome which is now full blown daily, especially in the colder weather…there are other mostly annoying side effects for me such as (more severe) night sweats. I also get achy the next morning after dosing but a medical marijuana tincture for pain usually helps with that. Much luck to you in this med.

I had my first Besremi injection yesterday at my health fund clinic. It was a painless injection in my stomach.
The only side effect I have is a dry mouth. Really not a big deal. I'll be very happy if that's all.

I had my second Besremi injection last Wednesday morning.
By early evening I felt very 'ordinary'. I woke up at 0110 a.m. feeling a little nauseous and very dizzy.
In the morning the nausea had gone but I felt ordinary and headachy the rest of the day.

I have found that my sleep has been affected for the last year and sometimes have trouble falling asleep or fall asleep and then wake up and am unable to go back to sleep for some hours.
This happened twice since the injection. Dr Google tells me that in one survey, 58% of respondents with ET complained about insomnia so it's not uncommon and probably just another symptom of ET rather than a side effect of the Besremi.

Today (Tuesday) is the first day I feel normal and not tired, achy or anything else!
The Besremi blurb says these symptoms should improve with time. Fingers crossed.
In any case, I still feel much more fortunate than those having to suffer through the side effects of heavy duty chemo..

I picked up my 'mini fridge' for travelling when I was in New York City on holiday.
I tested it and it seems to work really well.
I wish to make it clear that I have no financial or any other interest in https://4allfamily.com/ but thought this information may be useful to others who want to travel with medication that needs to be refrigerated.

Hi Gary, This is a great update. I’m hoping you adapt to the Besremi and keeps the ET under control for you!

Also appreciative of the update about the traveling mini-fridge! This is a really great idea for roadtrips with meds that require refrigeration such as Besremi, Forteo or insulin. Glad this worked out!
Are you having any difficulty giving yourself the injection?

Thanks Lori.

It is very easy to give myself the injection. I just dial the dose (100mcg until I see my hematologist again next month) and inject it my stomach - completely painless.

I had my third injection last week and saw my hematologist today for my regular three monthly appointment.
My platelets have already dropped from 640 to 528.
The hematologist wants to increase my dose but wants to wait for my next appointment to see what the platelet level will be and also possibly reduce side effects as my body should be more used to the Besremi.

I have a dry mouth pretty much all the time (I drink a lot of water and use Biotene).
I felt fine after the last injection and went to Pilates the following morning. I lasted 10 minutes because some nausea kicked in. I will skip Pilates after the next few injections to make sure I am more used to the Besremi.

Had a blood draw today, First time since March 2021 my platelets were in the normal range. Thank you Jesus!!!!

@preacherswife1977! It’s time for a Happy Dance! 💃
I’m so happy for you. You’re still using Besremi, right?

That's great news!

yes mam