BESREMi anyone?

I transitioned from hydroxyurea to Besremi in February because hydroxyurea was not keeping my white cell count under control, and I read that hydroxyurea doesn't do much to reduce the risk of progression to myelofibrosis or leukemia.
Long term, it does not reduce the allele burden, which is the current metric in determining the overall progress of reducing the severity of the disease and reducing the risk for blood clots.
I started well with Besremi. Generally speaking, the drug itself is doing what it is supposed to do. In the first few months my allele burden went from 91 to 80 with no side effects. However as time went on I started having difficulty with the thigh injections. Three times after I removed the needle the Besremi remained on top of my skin. I believe that was caused by the large amount of fluid retention in my thighs caused by my blood pressure medication. My hematocrit has creeped up to over 46, and I don't think the Besremi is consistently getting to the right place. So an alternate place to inject the Besremi is the stomach, which should work better.
Another issue I have which has recently occured is dry flaky skin on my face, ears and scalp.
This is a side effect experienced by about 25% of Besremi users.
It hasn't gotten any better with using a special shampoo and face cream. I hope to see a dermatologist eventually.
They are in very short supply. Overall I am glad I switched to Besremi. I am expecting the results of a second allele burden test soon and expect good results.
I am going to be out of town on vacation for a couple of weeks in February, and keeping the Besremi cool will be an interesting challenge.

Hi there, I have been on Besremi now since July of this year. I am on 200 and initially had some fatigue on injection day and dry mouth, but the fatigue has gone away and my only side effect is dry mouth. I am very grateful to have Besremi as it has only minor side effects and has been effective in bringing my numbers into the normal range. Best of luck to you with your treatment.

@eferret
I travel a lot and did a trial run on a short flight (2 hours) to Athens, 2 nights in a hotel followed by a cruise and another hotel night.

I used https://4allfamily.com/products/portable-medical-fridge-usb-insulin-medicines
I also bought a thermometer ( Instant Read Meat Thermometer Best Waterproof Ultra Fast Digital Food Water Milk Thermometer for Outdoor Cooking BBQ and Kitchen on Aliexpress) to check the hotel room fridge temperature. I'm glad I did because most of the time I found the room fridges were not cold enough.
The hotels were very accommodating and were happy to store the Besremi. On the cruise I stored it at the Medical Centre. I put it in a small, clear plastic bag with a label showing my name and room number.
The only thing thing stressed me was having to remember to pick up the Besremi each time we were leaving!

The Voyager was perfect for the flights. I bought the Pathfinder power bank for longer trips (though with increasing restrictions on using power banks inflight I'm not sure how that is going to work) or when the hotel fridge is not cold enough and there is no alternative.
I also made sure I got a letter from my family doctor just before I travelled that explained my medical need to carry the Besremi, the Voyager, ice pack, etc..
At security I told the staff I was carrying a cancer drug that could not be x-rayed. It sounded a bit dramatic but I realised it was the only way to be taken seriously and avoid any misunderstanding.

Happy to answer any questions.

Update on my besremi journey.
I started in June 2025 at 50mcg. Platelets around 1400. Excited about the Initial drop and minimal side effects but then I started to yo yo so we started increasing my dose. every two weeks. I got to 400mcg which dropped my platelets to normal range however I experienced extreme dysfunctional brain fog for a week and very dry eyes needing blink drops every couple of hours (of course dry mn winter doesn’t help) so have dropped the dose back to 350. Ill find out next week whether this will maintain my platelet level. Here’s hoping.

I have been on Besremi for almost a year now. Started me off on 100mcg the first 2 weeks and my moods got a little whacky. I was irritated more than usual, getting short with people. I also had some nausea and worsening fatigue. I was dropped down to 50mcg for about a month while also adding a different anxiety medication and nausea pills. They gradually upped my dosage from there. I have been sitting on 300mcg for a while now. At one point I was taken off of the Besremi because my eyes did a funky thing, but all was good after all tests were complete. I tend to inch in the injection site, but I also don't use the same injection site each time. I rotate them. I still get nausea from the Besremi and I have hair loss. I have very bad dry skin, and very bad dry mouth. Also, the taste of foods and drinks have altered. I too also have what they call brain fog. I still have what I call my flare ups but nothing like it used to be. Other than these issues, Besremi has been my life saver.

@sunshine1983
What did your eyes do? I was concerned and had them checked only to be told it was dry eye.