Attached is a presentation for patients regarding Besremi, in part comparing it to HU. It starts at minute 14:46 of the webinar and is by PharmaEssentia. Pretty good explanation of the drug. I was surprised at the longer term relative ineffectiveness of HU given it is the current standard of care in the USA. Also interesting is that Besremi is designed to treat the root cause of PV versus HU primarily treating downstream symptoms.
Besremi vs Hydroxyurea: Attached is a presentation... - MPN Voice
Besremi vs Hydroxyurea
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For Besremi, you can see clearly the benefit for mutations in the plot here for Jak2 allele. Some of us are switching or starting interferon for this reason.
But HU can work for a long time to control blood counts, and it does improve survival if these are controlled.
This plot here is from the data discussed in the video, the effect on allele vs HU is clear.
For the Besremi portion of the video, see my further notes in Replies, to post more images.
New Dosing: The Besremi guy said they are doing a study and may change the dosing to start at 250 rather than 100 to jump past that titration phase. Based on our joint experience, 250 seems high.
Ropeg vs Allle Conti PV
He compares three common interferons (INF). Pegylation is used to control the release of the interferon so it can be dosed less frequently and be better tolerated.
The table he showed, see image, explains that Besremi controls the pegylation to a single controlled location while Pegasys has at least 8 and Intron 40. This has come up in other posts. With many, less predictable locations the effects are less consistent. Intron has been inferior to Pegasys in some studies, discussed in earlier posts too and the high peg sites may be a reason.
Also note that Ropeg and Intron share the "b" version of INF, while Pegasys uses "a". I hope someday to know why one over the other.
Ropeg PEG sites
This table form the video shows nicely what has come up in an earlier post.
The different meds operate at different levels .
In over simplified form:
1- Interferon (the other INFs have this function also) right in the marrow
2-Rux for example in what the marrow makes
3-HU, Anagrelide ... Put a cap on what is made
There is an old post "Long Term INF Results" that gives some context to all this
healthunlocked.com/mpnvoice...
Ropeg operating Level
That video is 10 years out of date as it was known more than a decade ago that the interferon alfa-2a and 2b treat the root cause(s) of ET & PV and can "operationally cure" a 15-30% subset of them: pubmed.ncbi.nlm.nih.gov/220...
"This article highlights the current status of IFN-alfa-2 in the treatment of patients with ET, PV, primary myelofibrosis and myelofibrosis following ET and PV. In the context of being able to induce ?minimal residual disease? in a subset of patients after long-term treatment with IFN-alfa-2, the current risk-stratification systems used for treatment decisions are being challenged. It is argued that in 2011, the bulk of evidence for the efficacy and safety of pegylated interferons in treating patients with these neoplasms favors the upfront use of pegylated interferons, the goal being to influence the development of the disease at the molecular level and revert patients to a stage of minimal residual disease/operational cure instead of progressive clonal evolution, genomic instability and leukemic or myelofibrotic transformation during long-term treatment with hydroxyurea."
I agree much of what is on there is available in various publications. The Silver MPN group has had the insight of INF benefits for 40+ years, with this report being a retrospective study of some of that showing long term benefits:
ashpublications.org/blood/a...
The info on the MF therapies is also available in publications.
New info to me was the Bes trial looking at starting dose of 250 (vs 100), this is not in any publication I know of. Since most of us so far are on 50-100 that is news, and not sure how it matches our experience.
One update I was hoping to see is allele results for the IMG 7289 (bomedemstat) ET trial. They promised results last year but so far X. There are some intriguing results on the MF arm.
I'm convinced that Hydrea is the standard of care in most countries (I'm in Israel) because it's cheap and is readily available. I couldn't tolerate it at all. Am now on Besremi and at only 50mcg/2 weeks it has been holding my counts in check. I had a BMB recently and have an appointment to discuss results with my hematologist next month. Besremi is so new here that I'm my hematologist's first patient. He's been studying the drug thoroughly, but he ordered some extra tests on my blood and bone marrow to really check it out. Will post basic results as I understand them (no guarantees on that end!).
So is it approved/‘free-of-charge’ under your Kupat Holim?
Actually, I'm not in a Kupat Holim (problems with the Interior Ministry 😡) but still have medical insurance from the US. So not free of charge but a reasonable co-pay.
Ah! Would it be covered, do you think, for new Olim with a pre-existing medical condition?
People here are using it, so it's worth checking out. They'll want to put you on Hydrea but try to act like an Israeli and be insistent. Good luck!
Just had an idea. Where are you in Israel? I'm being treated by Dr. Itai at Soroka Medical Center in Be'er Sheva. He's the head of the hematology department and hopefully is impressed enough with the drug that he might be able to help you. Just a thought.
Bless you. I’m in the UK, but my son-in-law made Aliyah last year and we have contemplated going! I just enquired as I wouldn’t go anywhere where I’d be put back on HU - for all the reasons the thread states!
This is a much better place for Jewish people than the UK. No antisemitism here! Your son-in-law made the right move. Also there are many more people here with PV, due to the high number of Ashkenazi Jews so you won't have to explain yourself many times to doctors who don't know what you're talking about. So, should you decide to come, message me and I can give you details about Dr. Itai. He's not only a really good doctor, he's also a wonderful person.
I have ET but, yes, the link is there! Many thanks for the kind offer. When we next visit we could meet up anyway and compare CBCs 😂 But, seriously, I’d message you privately. I read that there are 4 MPN specialists in Israel, so not bad for such a small country. We could ‘pop’ in to Be’ersheva on the way down to Masada - haven’t been there for years!
We're actually in Arad, about 35-40 minutes from Be'er Sheva, and a much prettier and quieter place. And it's on the way to Masada.
My wife went to a rock fest there when she was a teenager! I’ve never been - will be in touch when we’re able to visit. Stay safe, meanwhile.
Great!
My 1st Dr said MPN is correlated to Ashkenazi, others have said not. Are there any published studies of MPNs vs ancestry in Israel?
From your info, it does seem at least a clear empirical connection wherein you indicate most Hems are familiar with MPN.
I believe there was a study published about Ashkenazi Jews and MPNs, but there's definitely an empirical connection. I'm in a small city but at least five people I know personally have PV. One GP (out of many here) said he currently has 6 patients with it. My next door neighbor is a nurse at the medical center where I go for treatment and confirmed that even non-hematology nurses know the symptoms of PV. I would say that's pretty strong evidence.
Agree that is strong empirical evidence. We hear for example from our various members around the world who often have encounters with MPN naive professionals. It seems that is very unlikely in Israel.
Sorry to jump in the middle of the conversation - but I am here in Israel as well and Maccabi is covering Besremi. I have ET and am currently on Peg and it is fully covered. My MPN specialist had to make a request for it but he said it was approved with no issue. He was the first person to prescribe Besremi in Israel and he told me it is also being covered by the Kupot Holim. Orangeboykitty, my wife and I met in Arad some 25 years ago when we lived there as part of a program for post Grads. Beautiful place!
After watching that video I totally agree. I’ve been on Peg since last June. Hydroxi and anagrelide for 6 years prior to that.Unfortunately for me the damage has already been done. My physical health has slowly declined as the hydroxi and anagrelide just decreased my blood counts. And sapped my haemoglobin. I’m trying hard to reverse it.
Your journey sounds a lot like mine. I was on Peg for 2.5 years, Jakafi before that and anagrelide before that. Basically I think I tried every drug that was available for PV. Since I've been on Besremi I have some hope of getting my life back.
I think you've discussed before, but to confirm in case I missed it, are you getting better results on Bes vs PEG.
It's still early, but I'm definitely having less side effects on Besremi than I did on Peg. Both have kept my numbers in check. Besremi seems to be lessening PV symptoms as well. Bone pain is gone and neuropathy is a lot less. Next month I'll be having a meeting with my hematologist to discuss the results of my BMB so I'll know more.
I've been on HU for 2.5 years (1000mg). I get blood tests every 3 months and lately by counts have been very low. Hemocrit was in the low 40s, but last time was at 35.3. White blood cell counts are at 3.3 and platelets are at 112. My iron level has dropped to 11 and after an infusion, it was 11.2. Are these counts too low? Has anyone had similar results? I'll have another blood test in 3 weeks and a consult with the doctor, what questions should I be asking? Thanks. Jim1949.
You should discuss your dose with your Dr. Some of your numbers are quite low by conventional measures, even for MPNs. While there may be other factors going on, this is an easy place to start your questions.
I've posted my PLT plot elsewhere, see image here. On 1000 HU my counts (HCT was similar) were heading too low. I asked to reduce to 500 at the low point here and finally settled bit bit more than 500/day. You can see it leveled out on less HU and I felt better.
Another question: is your Dr MPN specialist? Maybe not if Dr is not discussing these things.
PLT HU
Thank you so much. It was really really interesting and full of hope. It explained allele burden too.
LoubprvVolunteer
Hello. I m 68 have had PV for 14 years and have been on a steady 1000 mgs HU daily for that time. I really wouldn’t want previous posts here to depress or put anyone off Hydroxicarbamide who is a newly diagnosed patient.
The drug isn’t simply prescribed because it’s cheap - it’s prescribed because in thousands of cases it works extremely well and many many Mpn patients tolerate it without a problem.
Please if you are newly on HU - yes it’s very cost effective but it works really well. I have met MPN
patients who have taken it for 30 years.
So chin up folks.
There are hundreds of us out here on HU who are well, have loads of energy, and are living life to the full. I m on holiday on Malta at the moment, having had 4 covid vaccinations .
The majority of us are also not anti semitic - personally I have quite a few Jewish friends who are utterly delightful - though heaven knows why that should be mentioned on this site…..
Best wishes to you all
Louise
I agree on the utility of HU. Since HCT control was identified as a life and complication saving measure, HU has helped many live better. This advantage (blood control by INF -or- other means) is among the info in the Long Term INF report. I responded near perfectly to HU vs blood counts. But the scary label on the bottle doesn't help.
That said, I have switched to Bes; the result from the studies see "Ropeg vs Alelle Conti PV" plot above, and that Long Term report, is a motivation. It might not be a real advantage, but I believe it likely is based on current info. I'm also hoping for quality of life improvements.
Thanks for sharing! I really appreciate the "Different sites of action for current therapies" slide in the presentation. I can really picture it now. Excellent
Thanks for posting. This presentation was given by a rep for the seller of Besremi so that should be considered. My mpn who is involved with active studies is more cautious about overstating the potential effects of Besremi on allele burden but does think it is the best currently available drug for hct control and symptoms in my case and after four doses I am pleased I started taking it as my first drug for PV. He indicated that molecular response to Besremi remains TBD but that it is quite effective for hct and platelet control. For dosage I am at 300 mcg after starting at 100mcg and if that continues to control hct without adverse events we will keep there for now.
I recall your Dr is among the top. Is he questioning the reported allele reductions effect, or is he looking for more data on the utility of this effect?
The plot near the top here is clear on the reduction, and earlier studies on prior INF showed similar reductions (we've discussed in other posts) Is he not comfortable with the data that these came from? It's true these are averages, and not represent any one patient.
But we've also discussed the 2nd question, whether reducing it matters and I know he's waiting on that one as is my Dr.
My impression is that he is waiting for more data for reasons he and I didn’t discuss. I was so focused on questions regarding my own labs that I forgot to ask him to elaborate on that issue but will try to remember next visit. I was very pleased with my labs after 4 doses and that he said I can continue for now at 300 mcgs without further dose increase if my labs remain at this level. Was also pleased that I didn’t need phlebotomy since hct is under control for now. I will try to get more information regarding molecular response issues at next visit. He did confirm that the extent to which allele burden matters for outcome is still unknown to some degree and didn’t seemed interested in elaborating on that but I will question him regarding the more specific issue of whether he feels Besremi generally is thought to reduce the burden.
Very informative and a reminder of how Besremi is designed to impact PV at the core of the disease. I'm grateful I was able to wait for this drug to be approved by the FDA and not start any other drugs. Thanks for sharing.
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