I've been on Besremi now for about 11 months, although increased extremely slowly. Even more slowly than the 50 mcg biweekly increase. But I've been at 350 mcg for a while now. At my recent specialist visit, my platelets remain good, but I've continued to need phlebotomies with no improvement. Even though my liver numbers slightly worsened when I last was at 400, the doctor felt I should increase my dose to 500 to see if that would control HCT.
I also have now had 3 tests with allele burden as follows:
March 2023 (BMB): 14.1
May 2023 started Besremi - very slow titration
Sept 2023 reached 350 mcg Besremi
Oct 2023 14.9 allele burden
Apr 2024 14.5 allele burden
So I haven't had much of an impact for allele burden. It appears that perhaps once my dose was higher that it may have helped with the numbers, although the allele burden is so close, it's probably statistically just noise. We will see if my body can sustain the higher dose and whether it will impact my allele burden and potentially control my HCT.
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They have stayed completely within normal range until my dose was previously at 400. At that time, they both increased, but only about 10-20% above the upper limit. I then reduced the dose to 350 mcg and the liver scores both declined to within range. But at this point the medical team is suggesting that I increase the dose and if the ALT and AST increase, they are okay with it to see if it improves HCT. Have you had a similar experience?
it may be you just need more time as opposed to more Bes, I have posted before I know a PV patient who was on 180 Peg for 2 years before becoming venisect free, 11 months isn’t that long in interferon world
Yeah I’ve seen that it can take up to 2 or even 2.5 years to have an impact. I don’t mind bumping the dose to see if it helps. I can always reduce if it does have an impact. We can also reduce if it’s putting too much stress on my numbers or how I feel. For now, I feel fine. I was also considered for Rusfertide. If I do have another phlebotomy in 2 weeks then I may consider it. I’m probably more on the aggressive side here, but the data for Rusfertide looks pretty good for a stage 3 drug.
Rusterfide has its uses but it wont do anything for platelets or white cells or any possible disease modifying properties such as with the Interferons or Rux.
Yeah, it's exclusively focused on HCT control. But my platelets have been perfectly controlled from the Besremi and my allele rate has been steady or perhaps slightly lower so far on Besremi. Rusfertide has such a precise use.
You're getting frequent VAF readings. Great tracking. As in prior posts on various studies, CHR and VAF reductions have been well correlated. So assuming you get CHR with more time, you should see some VAF reduction starting with that. (as usual prior trends may not apply to each of us)
If time does not seem to be getting CHR and/or VAF, maybe ask about the Rux/IFN combo. This post discussed one of the studies that pointed to effective VAF reductions.
My concern is that the Rusfertide stage 3 trial enrollment is ending soon. So perhaps access might not be available until it is approved roughly 2026 rollout?
Sorry for confusion. This was re the Rux combo (Jakafi/IFN)
Rusf you're right is not avail outside the trial. And it would not be expected to help with VAF if that is a goal.
On a different med, I'm hoping to get early access based on good phase 2 results and its FDA approval for a different indication. This works best if the good ph2 results are properly published. But Rusf has no approval yet for anything and this early access works only when is has FDA for something and there is no alternative treatment.
Ahhh, sorry, my misunderstanding. I hadn't realized that Jakafi could be combined with an interferon with positive benefits to allele counts at my stage. I thought Jakafi was reserved for a bit later stage that I'm currently at.
Very, very interesting.
Do you have any more data that shows Besremi (or Interfn alone) vs. the combination? This study which you posted does appear to suggest the combo is potentially a lot more effective. Am I reading it correctly to show that after 24 months on the LOW LIMIT combo that the allele burden fell to 2, on average? Fascinating. That's unbelievably low, and low quickly. Perhaps at that stage dosages could also be reduced as well. Was there also a secondary benefit to HCT as well?
Wish I had my specialist appointment coming up sooner now. And Jakafi only a pill, too, and already approved. Feels like this should be discussed even more.
Wish there was a way to highlight the most important points here for the various conditions discussed. There's likely a lot of redundancy. I'm sure an AI of the entire thing could pull this information, too.
One member is on the combo (william-indo) and I think doing well last update. Problem in many countries is getting insurance coverage since this protocol is not specifically FDA or equiv approved.
There seems a surprising number of members not getting HCT in range on Bes. May still be similar to the trial experience, just stands out more here.
I'm not aware of any other detailed combo trials for PV. The one I linked said they will continue. The plot there, reproduced here, has two lines I added, the red and blue, explained in that post. My takeaway was not so much better VAF reductions than the use of smaller doses. But it could also help for non-responding on IFN only, this is why william-indo is on the combo.
Likely if I'd been on this I would not have had my tragic outcome.
Agree on the AI. I have to rely on memory of items of interest. At least a Google quality internal search would be nice.
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