Apologies to EPGuy

[TheaterCrazy]

I just wrote asking for those on the forum who take Besremi, for their reactions/side effects to it. Before when I asked, you were so kind to give me all the data., I should have been more explicit explaining that now that we had quite a few people on Besremi, I’d like to know what were their personal reactions I hope that straightens out my post prior to this. My moniker is Theater Crazy and you most likely thought - this person may be theater crazy, but she’s also crazy in that she’s not paying attention to her forum-mates’ replies. Hope this straightens it all out. .

[EPguy]

I can't find a reply I made to your questions but no worries. I have posted a lot of data over the months, not always easy to follow.

The quick answer to new effects for me upon starting Besremi INF is fatigue. This is on top of malaise which I've had since the start of my Dx.

Lately I get a "honeymoon" of several days after the dose, I feel good, then I get malaise with periods of fatigue. If I could choose, I'd prefer fatigue over malaise.

I did get the flu-like effect, but, as is common, it got better with time and was the least troublesome of the various maladies for me. The non-flu effects don't necessarily get better with time from what I can find in reports, but are related to dose size. Some patients get no bad effects at all on Bes.

--

I have Dx of PV/ET from late 2020. Started on HU and aspirin. It worked very well on blood counts, but didn't fix my problem of malaise.

I started Besremi last Feb, the first couple weeks when it was combined with HU were rough. As the dose increases from 50 to 120 by next month I am feeling plenty of side effects. There was a 3 week period that I felt good, I was on ~75mcg doses and blood counts were ok. I also started taking supplements of NAC and curcumin which may have helped.

As for many here, I'm in for the long term on INF, hoping to get the benefits that are possible. This plot shows the latest report for Besremi, the reductions in mutations or allele burden (AB) that Bes can provide. Note its advantage over HU, the grey "control". This potential benefit is worth some suffering to me.

My Dr recommends Jakafi saying I would feel good if I take it. But as always, your experience shows that's not assured, even on a small dose you could not tolerate it. That is a good reason to ask about Bes, your side effects at least should be different, and one hopes fewer, than they were on Jakafi.

We're all crazy in some way, and MPN adds another layer of nuttiness for me.

Ropeg5+Years