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BESREMi anyone?

Blood Cancers & Disorders | Last Active: Dec 19, 2025 | Replies (16)

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Profile picture for eferret @eferret

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.

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Replies to "I transitioned from hydroxyurea to Besremi in February because hydroxyurea was not keeping my white cell..."

@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.