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Essential Thrombocythemia treatment with Besremi

Posted by garyintlv @garyintlv, Jan 28, 2025

At my last appointment with my haematologist 2 weeks ago, he gave me the choice of starting HU or Besremi injections every two weeks. After we discussed the pros/cons I decided to go with the Besremi but had to get approval from my health fund which I received today.

I am away overseas and will see my family doctor when I return to get referrals for ECG, blood tests etc..
I will have to go to the health fund clinic for the first 2 injections under supervision but after that I do it myself. It will be a bit of a pain travelling with the injections because they need to be kept 2-8°C (36-46°F). I am thinking of investing in this: https://4allfamily.com/products/portable-medical-fridge-usb-insulin-medicines (any better ideas welcomed).
https://pubmed.ncbi.nlm.nih.gov/38438627/
I will report back after I start the Besremi.

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stevie123 | @stevie123 | 9 hours ago
In reply to @lehall125 "I was diagnosed with ET and was referred to the Mayo Clinic in Arizona. After a..." + (show)
Profile picture for Wrestling Mama @lehall125

I was diagnosed with ET and was referred to the Mayo Clinic in Arizona. After a bone marrow biopsy, chromosome test, and a full abdominal ultrasound, everything was normal except CALR positive, JAK2 negative, but continually elevated platelet counts. I learned my condition is NOT genetic, but rather a DNA mutation common as you age. I am now taking a low dose 500 mg hydroxyurea MWF. But it was reassuring to know everything else was normal. I continue to eat an anti-inflammatory diet and work out at my our local gym to try to stay as healthy as possible. Grateful for the otherwise good health.

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@lehall125 I was wondering how old are you? People dont seem to give their ages out. I was just diagnosed with the same thing two weeks ago. I am 70. I am going to start to exercise more because I noticed I want to take a nap or I am seem to get tired around 4:00 pm and I want to fight this rare blood disorder any way I can.

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Wrestling Mama | @lehall125 | 7 hours ago
In reply to @stevie123 "@lehall125 I was wondering how old are you? People dont seem to give their ages out...." + (show)
Profile picture for stevie123 @stevie123

@lehall125 I was wondering how old are you? People dont seem to give their ages out. I was just diagnosed with the same thing two weeks ago. I am 70. I am going to start to exercise more because I noticed I want to take a nap or I am seem to get tired around 4:00 pm and I want to fight this rare blood disorder any way I can.

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Hello @stevie123
I am 74 yo. I have however stopped taking HU November 2025 because I lost too much hair, 2 teeth, and had constant joint and bone aches. I see a functional medicine therapist, an acupuncturist, and a chiropractor as well as take prescribed supplements to lower my platelet count. I also continue to work out and eat an anti-inflammatory diet. I will go in for a blood draw next week to see if this alternative treatment is working. Unfortunately, none of this non-pharmaceutical treatment is covered by my insurance, but my quality of life is much improved.

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