Hi again, I started with Besremi (100 mcg, biweekly) 8 weeks ago and so far there hasn't been any visible effect on my platelets count - still in the range of 700k. My other blood counts have been in the normal range from the beginning (ET/prePMF, Jak2+, high-risk).
I havent been on any other medication to reduce cell count before but started right away with Besremi
I know that interferon is rather slow in reducing cell counts but seeing no effect at all so far makes me worry that I might be one of the non-responders also given that I was dignosed with a DNMT3A mutation last summer. There a publications stating that this mutation could lead to interferon resistance.
I would very much appreciate your thoughts on this.
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berlin_72
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You are correct the the interferons take time to work. You are still on a very low dose of Besremi. Your hematologist may want you to increase dose. Providing you are tolerating the Besremi, this would make sense. Best to discuss your options with your MPN care team.
I’m in the same position, been on Pegasys for 6 months… 45 mcg fortnightly increased to 90 fortnightly, then switched to besremi about a month ago and injecting 125 fortnightly, about to increase to 150.
Throughout my bloods have been stable, and not decreased.. I’m usually on venesections 3 monthly.. however only after a month I’ve now been asked to come back as hct os 0.46.
I was initially concerned given that my blood control seemed better pre medication and that I would have hoped that after 6 months I’d start to see some response or at least continuation of being stable..
When I discussed with my care team, they reiterated that the dosage is still low.. I’m a 95kg male, so might take a while to find optimum, and it can take time find the optimal dose and to see a response and that sometime we can have spikes in cell proliferation
Other than injecting, and venesections, my quality of life is good.. which is the main thing as a relatively young male (42) with two young children.
I remain positive that I’ll get this under control and see a good reduction.. I have faith in my team and advice given.. and the wider research on interferon outcomes..
Keep doing what you’re doing, having consistent dialogue with your team and I’m sure you’ll turn a corner!
Thank you for your replies and support. And good to know Steve, that you share a similar experience. So it seems to be quite a test of patience. I hope you will get to see first results soon.
I have an appointment with my hem next week and then I'll talk it through. I am a bit concerned about increasing the dose, since I already experience quite a few side effects but maybe that gets better with time as well
It’s most likely a matter of dose and time, 6 months isn’t that long for infs, I posted here before I know one patient with PV who took 2 years at dose up at 180 Peg before he stopt venisecting, he is back at 90 now and alleg no trace of disease, although not sure how he knows that as no BMB
Thank you for sharing. The risk stratification is interesting and helpful. I was changed into the high risk category because of earlier thrombosis/stroke. I also read somewhere that its the mutational status and not necessarily the high paletets that increase thrombotic risk. Thats why I opted for Interferon..
I can attest to the fact that it can take time to find the "right dose" of inteferons and time for them to work. While for some they seem to work almost immediately, for some of us it can take a while. I think it took more than a few months (maybe 6) for my platelets to start to fall and about 18 months for them to get into normal range (but first time in a decade they were WNL). I also have a very minor TET2 mutation burden so don't know if that affected time line but have been on them for almost three years now (Peg and now Bes due to Peg shortage) and working well.
I started Besremi in May 2023 and here is my platelet history. Note that the impact was pretty quick. However, I was at 400 mcg of Besremi by October 2023. I'm now on 500, FYI. You may need a larger dose. I have seen an incredibly wide range of doses here.
its really good to hear about your different experiences. I'll keep on doing my ommmms 🧘and hope that it is a matter of dosing and time and not about resistance.
I’m surprised your doctor hasn’t had you increasing the dose in 8 weeks - 100mcg typically is just a starter dose and then you escalate from there. No need to worry yet- chances are you will see success on a higher dose
it can take time. For me, it was 6 months of slowly increasing Pegasys, and I didn’t respond until I reached max dose of 180 mcg/week. But with the slow approach, my body had time to adjust and I have no side effects to INF. I was able to them reduce dose to 135, and now 90. Be patient; it’s worth the wait.
I started Besremi about 6 months ago and just this month got my platelets under control (HCT came down fairly quickly). We discovered after I had been on the Besremi for a few months that I had became pretty iron deficient (whether from the PV or from the phlebotomies I had just before starting the Besremi is a little unclear), but my hematologist speculated that iron deficiency could actually be driving the high platelet count rather than the underlying disease. I started eating more meat (along with steadily ramping up my Besremi dose, now at 450) and now my platelets are down to a normal range (200-300), from a high of around 800. You might talk to your doc about checking your iron levels to see if that could be contributing to high platelet count. I also have DNMT3A.
I have been iron defficient as well but it didn't seem to affect my platelets. They pretty much always stay in the same range. But I'll go and talk with my hem about iron supplements.
Hi Berlin. IFNs are slow to work and you seem to be on a low dose. I've been on a very low dose Pegasus and it took nearly a year to become effective, but it is now. Keep going and be patient. There is a debate on here and amongst medics of low and slow vs fast. Many be worth talking dosage with your haemologist. I'm not advocating.
my Hem certainly seems to be from the slow and low fraction. Knowing now that my dose is still very low I hope we will dose up a bit next time I go and see him.
Hi, I asked my MPN specialist if dnmt3a was a contraindication to besremi, he said NO. I also remember that the MPN Research Foundation did a study a couple of years ago to determine if dnmt3a negated the effectiveness of besremi and they determined that it was not a problem, it was published in one of their quarterly newsletters. I also have dnmt3a at 40%. I procrastinate at everything so have not tried besremi yet. Best to you
I am ET JAK-2 also with DNMT3A. I’ve been on Pegasys for 2 years. It took me a full 6 months and the max dose (180 mcg/wk) to respond, but once I did, my counts came down nicely, and I was able to reduce my Peg dose to 135 and then 90. Currently I’m on 100mcg/week), but I have been needing to slowly increase my dose, so I am wondering about inferon resistance with the DNMT3A. My JAK-2 allele burden went from 29% (2023), to 14% (2024) and now it’s back up to 22%.
At the time I started Peg I was under the care of a regular hematologist who did not do a bone marrow or NGS panel. I just switched to an MPN specialist and was amazed by the more in-depth diagnostic testing. That’s when I found out about the DNMT3A (VAF 28%). All of my results are trickling in, and I will meet with the MPN specialist in 2 weeks to review the findings.
I’ve always wondered why some folks can respond so quickly and to such low doses, while others of us need really high doses. Maybe it’s the concurrent mutation - I’m eager to speak with the MPN specialist and learn more about this and whether it impacts my treatment options.
In my reply above are some reports on DNM3TA. In those, it's not a signif risk on its own, but was correlated to resistance to IFN. You can ask your specialist's opinion on these reports, and hearing Drs opinion would be interesting for members here. But some Drs don't want to hear about our "google searches".
I definitely plan to ask about the potential of interferon resistance with JAK-2 + DNMT3A, and will report back. I’ve spent the past few days reading many publications, and the topic of MPN driver with concurrent non/driver mutations is very complex and clearly an area that would benefit from further study. This is a new doctor for me but in our initial visit, she understood that I have a medical background and am very interested in the research side of this disease. She commented that I was “dream patient” because of my understanding of the disease and expressed support of my desire to participate in decision-making, so I think she’ll be amenable to questions. Will keep you all updated.
Thank you for sharing your experience Minify. My specialist decided its best for me to carry on with the low dose (100mcg) for the next months. Significant reaction in blood counts take time and I should not be worried about the DNMT3A status.
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