Here as promised is a simple point plot of the results.
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The box on the right is the plot from the real Proud-PV study for Ropeg (Besremi).
My pharmacy, Biologics, told me recently that their patients are all dosing 100-150 and they have more than 100 patients on it. None were over 150mcg. See box plot. I'm not sure about that, but at least suggests a low dose trend. Any members using this pharmacy welcome to comment.
In this plot is the current status right now of responding members. Some non-CHRs may achieve CHR with more time.
This is not a scientific nor controlled result at all, but still interesting slice in time. n= 14, Some real studies have a similar number so a small sample is not unheard of.
Reported doses are adjusted, if required, to reflect the one dose per 2 weeks schedule of the box plot from the study.
If there are more replies, I can try to update this plot.
I hope to repeat this next year when most of the current Bes patients here should be on the 1/month schedule.
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I have not done this for our PEG members, one reason is the doses we see there are not so different from that used in various studies. In contrast, Bes has some large inconsistencies. But I can make a plot for PEG if we get some data there.
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Notable observations:
-We trend well below the main range in the Ropeg study, while some are right in it.
-My pharmacy's report is not far from our own experience, but the higher doses among us should be from other pharmacies if what they said is true.
-CHRs are weighted to lower doses than non-CHR.
-One member has CHR at 33mcg, with an AB (allele burden) of 6%. This is only an observation.
-One member, red circle, is reverting to PEG with tolerance trouble at the high Bes dose needed.
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EPguy
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Interesting slice of data. About 50% of us are achieving CHR, typically at doses much lower than the PROUD-PV study. It will be interesting to see how this plays out over time.
I agree it's new info. I didn't expect that low dose-CHR bias. The 50% CHR seems sort of consistent with what I recall the studies at this early stage, but as you say, not the dose. CHR is supposed to improve with more time.
I don't think such early real use data is avail anywhere outside our group for the moment. Of course the low n is an issue as is a long list of things. Still interesting in any case.
Hi EP Guy, Thanks for this and your time to collate it. It is a very useful aspect of this forum that we can share info to help each other, which we simply don't get from elsewhere. Good to see that so many are getting CHR, and at quite low dose. The reasons for not getting a response could be zygosity as discussed recently, so the member who has reverted to PEG is probably making a good call because it may not matter how high the dose gets, they may not get a good response. I'm on PEG but hope that one day can be on Besremi, so I watch the Besremi information with much interest. Best wishes.
Thanks for pulling this together. I suppose the big thing is the difference in the time everyone represented has been on the drug and knowing (over time) what dose is needed to maintain CHR.
Not to change the subject here, but am I right that just because we get CHR that doesn’t mean disease progression has stopped — but it might mean we have a shot at that? If I remember right, it was a smaller subset of those in the study who experienced a stop or slowing in disease progression.
Hi GardNerd, I like your question below but I do not know the answer but will wait if anyone will respond.
"Not to change the subject here, but am I right that just because we get CHR that doesn’t mean disease progression has stopped — but it might mean we have a shot at that? If I remember right, it was a smaller subset of those in the study who experienced a stop or slowing in disease progression."
My impression is the CHR responses are more individual and less time dependent. Only a hunch from the replies and prior posts- many of us started last winter and are finding a stable titration point. But you're right some are still adjusting and moving toward CHR.
Most convincing evidence will be when we're all stable at 1dose/month next year.
I've posted before on multiple studies pointing to a clear correlation of MR (allele reduction) and CHR. BMR (marrow response) is more varied. See links in the reply here to L2Lulu. So CHR for sure improves the shot at it.
But how or whether these relate to progression is the big question that many Drs are not convinced. The long INF study by the Cornell MPN group discussed in posts points to this benefit, but connecting all these pieces is not really possible so far.
The latest final Ropeg 6 year results showed 21% reached less than 1% AB. But no one said that is an absolute magic number, more or less, to stop progression.
I'm about to negate what Biologics has stated: I get my BES from them. I have 12 bi-weekly injections under my belt (literally!... I inject around my navel! ) and am at 400 mcg (the last 3 injections have been at 400. ) I have not achieved CHR and will likely increase my dosage again shortly. My counts were well-maintained on HU prior to BES. I am weaned off of HU for about 2 months. It is disheartening not to be getting better results but I seem to tolerate BES well with no real symptom burden (except that at my last visit my liver values were elevated for the first time.) But I feel well enough on BES... just wish it showed evidence that it is favorably affecting my marrow. So far it is not.
Thanks much for the reality. I've updated the plot to show your dose point on the pharmacy, and your point on No-CHR. I'll continue updates if/when members provide new info.
I had thought good response to HU might lead to same on Bes, at least for you it is not that way. Did you respond quickly to HU?
Re allele, marrow, CHR, I've posted recently on the relations (or lack of them) to these factors. Marrow responses (BMR) seem to take ~4years in the study here to even get a good start. For MR or allele (AB), there is a strong correlation of CHR and AB reductions. So we need to get to CHR for best odds of MR.
Have you done a BMB before starting Bes and again just recently? That is quite a procedure to do so often. I will discuss with my Dr about waiting 4 years. But AB can show results after the 1st year in many cases.
I did respond to HU quickly. I was on it a total of 3 years... first at 500 mg/day and then to 750 mg/day. I had no phlebotomies for 20 months but my HTC and Platelets both hovered at high end of an acceptable range (the latter was sometimes above normal). I feel if I didn't switch to BES I'd probably have to increase my HU dosage. I have not had a BMB since diagnosis 6 years ago nor do I know my AB although we'll probably check it soon more out of curiosity, per my doc.
Hi, EPguy. I'm not sure this is considered CHR for your chart, but (as of today) my WBCs, Platelets, HCT, and Hemoglobin are all in the normal range. First time since diagnosis with PV 15.5 years ago!
I started on Besremi in mid-June at 100 mcg and increased by 50 mcg almost every two weeks. I hit 500 two weeks ago. Side effects are manageable -- some fatigue, very infrequent nausea, and some melancholy/moodiness (not bad, although my spouse might disagree a little).
The Doc wants me to stay at 500 for now, but he might start taking me back down. My AB is very high, and he'll check that again after I've been on the drug for a year. Fingers crossed on that one.
That is a good sized dose, still within the trials range. That's great news to have CHR, you found the fix, and with tolerable sides.
With CHR, your AB might show some good progress, let us know.
On the plot, I plan to collect fresh info early next year, if members are ok to put up with the questions. I figure some (I hope myself too) are on the stable 1/month dosing by then and we might see more stable data. But unfortunately I'm not organized enough to keep a running tabulation.
Thank you again for this information. I am on Pegasys and have enjoyed getting my life back. I use to be super itchy ( for many years before diagnosis) and after a year of treatment I have noticed that even this crazy reaction has subsided.
I started at 90 then months later jumped to 135 and then 180 for 4 weeks. The platelets and reds responded very well to the high dose. Have been at 90 mcg /week for almost 5 months now and holding steady. So very happy to been on these meds.
I'm in the fast reacting group, I guess. Started Besremi in the 50-100-150-200 mcg progression, but stopped at 300 or 350 because my liver was unhappy. My platelets and HCT came down quickly on the drug, went up again on the 6 months I was off to protect my liver and arrange finances, then got back on and within a half year had both numbers (tho not naughty red cells) totally within normal on a mere 100 mcg/twice monthly, the first time in decades for my platelets. This winter was hard, though, being full of side effects to either the Bes or the PV. As spring came on, I switched from 100 to 50 mcg twice a month. I'll be tested in another month to see if good blood counts hold, and if I continue to experience fewer complaints...April 2024
Thanks for posting the data. Very interesting that there are those of us who are experiencing a good response at lower doses and those who do not. Like all things MPN, we are all different in how we present.
I agree with the comment below that zygosity may be playing a role in efficacy; however, I expect is is more complex than that. I would theorize that there is a complex array of genetic factors that play a role in how people respond to Besremi and the other treatment options. Hopefully, as we gain a better understanding of the relevant factors, precision medicine will be possible.
My current status is to remain at 175mcg Besremi biweekly, my max tolerable dose. It appears I will need a venesection about every 12 months or so. Perhaps over time the length of time between venesections will get longer.
It would be neat to see this plot with current members' results. This old post got refreshed somehow. Likely there are many X more on Bes now and for more time.
I tried a year later but it didn't take.
I think there are signif members over 300, while an impression remains that those able to hold lower doses are more likely to maintain CHR, just a hunch without fresh data to redo this plot.
I am inclined to agree with your hunch, with the proviso that our responses are widely variable. We are not at the point of being able to practice precision medicine in regards to Besremi dosing. Unfortunately, some seem inclined to seek a "one size fits all" approach to dosing along with "more is better." . I think this is a serious error. I do not think that the risks do not justify the putative benefits of the more aggressive dosing strategy.
As I would expect given my usual status as a frequent medical anomaly, I'm a clear outlier, as I'm still on 500 mcg SQ every 2 weeks, although my Hct have mostly behaved [from 44-47% generally].
Unfortunately, they blipped up to 49% at my last draw about 2 weeks ago, and also unfortunately, it was still there when I repeated it about a week later- after my routine Besremi dose [and after pounding copious water pre-draw], so i had phlebotomy of 500 ml last Friday, and I'm to wait a month then get my next CBC.
Ironically, I had been feeling marvelous lately [previous to phlebotomy], with significantly increased energy, motivation, and endurance for some pretty strenuous yard work. I've cutting up and stacking firewood in the process of clearing tons of mature ash trees that the Emerald Ash Borers had killed- hopefully before they rot and lose their firewood value,
Unfortunately, since the blood-letting, I have been feeling significantly more tired, logy, and a lot less motivation. I had originally attributed at least part of my increased vim and vigor to the onset of longer days and brighter skies, but despite that not having changed, my get-up-and-go seems to have gotten up and went.
This makes me think that my sweet spot for feeling well is somewhat above the desired goal Hct [say 47-50], but still less than the 60's it used to get up into before I was diagnosed.
In those days my legs were always tired and painful, and I would need to sit and rest after just a couple of hours of yard work, and like as not, I'd be too sore and tired to get up and go back out to finish it after having sat for even a little bit,
I'll stay in touch with updates as needed, but for now, I think you can just mark me as "outlier".
You can see my reply to Hunter. You fit the impression.
You seem to be well past my minimum, and arbitrary, definition of being well; ability to travel without worry. This way exceeds the import of getting all the numbers just right.
Sorry for the delayed response but thank you for the endorsement.
I totally agree with your philosophy.
After all, to paraphrase an old saw: "Living well is the best [possible outcome] revenge, and given that my platelets and WBC's have responded to now read as slightly below normal, I think my overall thrombosis risk must be significantly lower despite my Hct hovering at 49% again. [Even after a successful phlebotomy session last month].
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