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BESREMi anyone?

Posted by @N.C.94 @upnorth94, Jul 10, 2023

Diagnosed with PV with JAK2 mutation In November. Did not do well on Hydroxyurea. I just started BESREMi at 100mg every 2 weeks. I have had only 1 injection so far but concerned about side effects. I am curious about how others are doing?

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nancyra | @nancyra | 1 day ago
In reply to @cariadk "@nancyra I have ET with Calr No hair loss and no mood swings for me. Besremi..." + (show)
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@nancyra
I have ET with Calr
No hair loss and no mood swings for me. Besremi has been very successful for me. I’ve been on it for just over a year and have been in the normal range or close since December. (Started at 1400) HU only ever got me to 600s. The highest besremi dose was 400 for me and now I’m down to 200. The main side effect is being tired and that is probably the ET not the drug. I do get dry eyes.

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@cariadk
Thank you for your reply!
Ok good to know. As with starting anything new the list of potential side effects is always a scare. My hem says we will start low and move higher as needed rather than the other way round.
Hopefully proves will come soon..

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csrb7007 | @csrb7007 | 11 hours ago

I start Besremi today.

Cautiously optimistic.

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calbaric | @calbaric | 8 hours ago
In reply to @cariadk "@calbaric It’s going well. My dose has been dropped to 200 for several months and my..." + (show)
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@calbaric
It’s going well. My dose has been dropped to 200 for several months and my platelets have fluctuated between 450 and 560. I get tired for a day or so after the dose and my skin is very vulnerable to any little ding but that could be my age and need for collagen. I still get dry eyes periodically and use systane at night when that happens. Overall my hematologist and I am pleased with my progress.

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@cariadk Thanks for the update.

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pfscheyer | @pfscheyer | 8 minutes ago

I was diagnosed with PV in January of 2021 and was started on Hydroxyurea. In the last year I started getting a lot of skin cancers. My doctor at MD Anderson recommended that I get off of the Hydroxy and since Jakafi also has a side effect of skin cancer we decided on besremi. In April I started B and the process of decreasing the Hydroxy. Come June when I was down to almost no Hydroxy my platelets shot up to 1450 and I had to get back on 1000 ml of Hydroxy. I have the same problem with my playlist when I was on hydroxyzine reduced my dosage.) At that point my dose of besremi was 300, I think. By mid July my platelets were down to 410 so we reduced the hydroxy to 500, one tablet. 3 weeks later platelets were up to 754. We increased the B to 500 and in a week they went down to 630. I'm hoping that they'll continue to go down and I can get off of the hydroxy. I have some concerns however about some of the side effects of besremi. There's a whole long list of side effects and the one I was most concerned about is the psychological effects. It makes me overly anxious. I also have a lot of itching but I had that with the hydroxy and it seemed to subside after a while. I was glad to see that someone had experienced platelets reduced. I'd like to know if anyone else's experiencing side effects from besremi.

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