40,000 Patient Records Reflect >50% Maintained or Increased Weight Loss After 24 Months Off GLP’s

[50ShadesGreyMarket]

According to the records of 40,000 patients at Epic, more than 50% of them were able to keep off the weight or continue to lose weight in the 2 years after discontinuation of GLP-1’s. Roughly 20% gained the weight back. This is based on medical records, not self-reported. Regardless of how many studies or reports come out, I still hear people parrot the narrative of Big Pharma that “once you pop, you can’t stop”. I get this may be the case for opioids, but GLP-1’s seem to affect different people differently.

Two Years After Stopping GLP-1s, Most Patients Sustain at Least Some Weight Loss

Facilitating rapid sharing of new medical knowledge

www.epicresearch.org

 

[Airborne Daddy]

Must have been some good motivation and life changes after losing a ton of weight. After that accomplishment your gonna fight tooth n nail not to fuck it up..... encouraging news!

 

[CallieKat]

How many of those went underground and are still on glp…or just not sharing with their doc that they are on compound now…

 

[50ShadesGreyMarket]

How many of those went underground and are still on glp…or just not sharing with their doc that they are on compound now…

The problem with cognitive bias is that no matter how much data exists there will always be people who insist the reported outcome must be fabricated. It’s not possible to do a scientific research study that convinces everyone. We still have folks who insist the Earth is flat. 🤷🏼‍♀️

 

[50ShadesGreyMarket]

Must have been some good motivation and life changes after losing a ton of weight. After that accomplishment your gonna fight tooth n nail not to fuck it up..... encouraging news!

My theory is that there was something healed in the gut. I was put on Semaglutide by a doctor when my BMI was 20 due to low levels of Akkermansia. I had an actual test though, it wasn’t a theory. I regularly hear people say “my hormones are all outta wack” yet the person hasn’t visited an endocrinologist, they just started dosing stuff or went on birth control or supplements to “balance their wacky hormones” with no baseline. Are they consulting tarot cards or astrology?

 

[CallieKat]

How many of your epic records show you are still on it? My record almost 3 years ago shows I took MJ for 2 months and now it doesn’t…never stopped..would it count me as a maintainer?

 

[Airborne Daddy]

How many of your epic records show you are still on it? My record almost 3 years ago shows I took MJ for 2 months and now it doesn’t…never stopped..would it count me as a maintainer?

Like when I tell my liver specialist I have 5 drinks a week?

 

[desinr-gal]

My theory is that there was something healed in the gut. I was put on Semaglutide by a doctor when my BMI was 20 due to low levels of Akkermansia. I had an actual test though, it wasn’t a theory. I regularly hear people say “my hormones are all outta wack” yet the person hasn’t visited an endocrinologist, they just started dosing stuff or went on birth control or supplements to “balance their wacky hormones” with no baseline. Are they consulting tarot cards or astrology?

This confuses me. Akkermansia produce GLP1, not the reverse, so why didnt your doc prescribe akkermansia probiotic, or you know, the implant procedure? With a bmi of 20, glp-1
wouldnt have been indicated?

 

[50ShadesGreyMarket]

I was on .25mg, idea at the time was to take it for 20 weeks and re-test; I started in August. Implant wasn’t suggested but I would be against that especially since I already get an MRI with contrast every 4-6 months. Before surgery they wanted to implant a vagus nerve stimulator in my chest and I declined. Ended up staying on Topamax instead until a few months after the procedure. I’m trying to move in a direction where I am less dependent on prescription medications.

I have another appointment beginning of December and I’ll ask about probiotics as an option.

 

[50ShadesGreyMarket]

How many of your epic records show you are still on it? My record almost 3 years ago shows I took MJ for 2 months and now it doesn’t…never stopped..would it count me as a maintainer?

I’m not with Epic but I understand the question is related to patient records. Have you had a conversation with your doctor? Out of the nearly 190,000 patients that discontinued GLP-1’s, they only chose to follow up with 40,000 of them, likely to control for situations like yours.

 

[CallieKat]

I’m not with Epic but I understand the question is related to patient records. Have you had a conversation with your doctor? Out of the nearly 190,000 patients that discontinued GLP-1’s, they only chose to follow up with 40,000 of them, likely to control for situations like yours.

This article doesn’t say it controlled for anything. The fact that the authors do not mention the possibility of patients switching to compounding as a limiting factor in this study makes it weak.

If my chart was picked for this study it would show that I discontinued it (no more prescriptions written and no self report from the patient) and lost more after I stopped picking of prescriptions. How could the chart detect I went to compound?

To those that carry the genetic propensity for obesity we know that nothing is being cured. When we come off glps we find the insatiable appetite and our exquisitely trained taste buds come right back on line…not much warm up necessary.

 

[cheaperseeker]

To those that carry the genetic propensity for obesity we know that nothing is being cured. When we come off glps we find the insatiable appetite and our exquisitely trained taste buds come right back on line…not much warm up necessary.

Mine starts to come back by the end of the week. I can't imagine maintaining for 2 years after stopping GLPs, without feeling hungry all the time like I have on so many diets. I'm not going back to that!

 

[Retazempic]

I’m in the 20%, and I’m fine with that. We don’t judge ppl who need glasses for wearing them.

 

[Nathanologist]

This confuses me. Akkermansia produce GLP1, not the reverse, so why didnt your doc prescribe akkermansia probiotic, or you know, the implant procedure? With a bmi of 20, glp-1
wouldnt have been indicated?

Probiotics alone won’t change your gut permanently. One is better off changing their diet to feed the bacteria they desire.

 

[lessthanhalf]

Just my opinion here
I suspect there are some serious methodological flaws in this study, I am not qualified to judge this, but if any readers with research experience are, feel free to comment.
It is worth noting that this is not published in a peer reviewed journal. "However, it’s important to note that they do an internal peer review, but no third party peer review"
There have been a lot of studies on weight regain after weight loss, as in hundreds to thousands of papers on the subject. The results of this study are not consistent with the previous research.
In general most studies over the past 40 to 50 years show that most people who lose weight regain all or most of that weight over the next few years. Irrespective of how they lost the weight. This has been my personal experience as well.
The SURMOUNT-4 Randomized Clinical Trial
After 36 weeks of open-label maximum tolerated dose of tirzepatide (10 or 15 mg), adults (n = 670) with obesity or overweight (without diabetes) experienced a mean weight reduction of 20.9%. From randomization (at week 36), those switched to placebo experienced a 14% weight regain and those continuing tirzepatide experienced an additional 5.5% weight reduction during the 52-week double-blind period.
This is a prospective, controlled, randomised clinical trial published in a reputable peer reviewed journal JAMA Journal of the American Medical Association
It showed 20.9% weight loss with tirzepatide, after ceasing it over a year, the ones on placebo gained 14%, leaving average weight loss of 6.9%, those who received tirzepatide lost a further 5.5%.
There are many other good quality peer reviewed papers that show similar results for tirzepatide, semaglutide and all other weight loss methods over decades excepting surgery.
Sorry but that study sounds great but is not likely to be accurate, there is very little description of their methods of getting and interpreting the data they used so it is not really possible to assess what went wrong. They are making extraordinary claims, that are different to the established body of research, do not acknowledge this in the article and fail to provide the extraordinary evidence to back up their claims.
One of the great things about access to inexpensive GLP-1 drugs is you can experiment with stopping and starting and increasing and decreasing doses as needed. Based on the research, I think most people are going to need to stay on the dose they used to lose the weight, to keep it off, but trying reduced doses or stopping it for maintenance is a easy harmless experiment so long as you don't let weight regain get away from you before restarting it if necessary.

 

[desinr-gal]

Probiotics alone won’t change your gut permanently. One is better off changing their diet to feed the bacteria they desire.

That is totally true, and some probiotics are tricky to acquire. There is one you only get when you're born. Antibiotics kill them.

 

[noggin]

The problem with cognitive bias is that no matter how much data exists there will always be people who insist the reported outcome must be fabricated. It’s not possible to do a scientific research study that convinces everyone. We still have folks who insist the Earth is flat. 🤷🏼‍♀️

There's a pretty good argument that this data is highly biased and not representative of real weight regain after discontinuation.

To collect this data, they queried Cosmos (Epic’s aggregated dataset) for patients with a continuous GLP-1 order >90 days who lost >5 lb, and who had no GLP-1 order in the year after the estimated end of treatment. That's it. It doesn't account for people switching to compounding, or even switching to a different healthcare provider who doesn't use Epic's system. To count as "discontinued" patients could have very well switched doctors, stopped refilling but using old supply, or even have paid in cash for their medication (which means it won't show up in Epic's EHR). Additionally this only accounts for people who later came back and got their weight checked a year later, but that's another story.

Let me reiterate, If a patient switches to:

• A hospital system running Cerner, Athena, NextGen, eClinicalWorks, etc. (Anything except Cosmos)
• A clinic that does not participate in Cosmos
• A telehealth platform that is not integrated with their old Epic chart
• Most importantly, compounding (millions of people switched over during shortage)

Then this study now considers them "stopped"

You can see how the results might potentially be biased.

 

[50ShadesGreyMarket]

There's a pretty good argument that this data is highly biased and not representative of real weight regain after discontinuation.

To collect this data, they queried Cosmos (Epic’s aggregated dataset) for patients with a continuous GLP-1 order >90 days who lost >5 lb, and who had no GLP-1 order in the year after the estimated end of treatment. That's it. It doesn't account for people switching to compounding, or even switching to a different healthcare provider who doesn't use Epic's system. To count as "discontinued" patients could have very well switched doctors, stopped refilling but using old supply, or even have paid in cash for their medication (which means it won't show up in Epic's EHR). Additionally this only accounts for people who later came back and got their weight checked a year later, but that's another story.

Let me reiterate, If a patient switches to:

• A hospital system running Cerner, Athena, NextGen, eClinicalWorks, etc. (Anything except Cosmos)
• A clinic that does not participate in Cosmos
• A telehealth platform that is not integrated with their old Epic chart
• Most importantly, compounding (millions of people switched over during shortage)

Then this study now considers them "stopped"

You can see how the results might potentially be biased.

I know regardless of how research is done, regardless of outcomes, there will always be a subset of the population that insists their theory with no data is more valid than any study with data. Covid-19 was a perfect social experiment, we still have individuals who believe bleach can cure the virus within the human body. @Nathanologist made a post about this a couple of weeks ago.

If you actually read the report, out of the 189,000 patients, only 40,000 were included to avoid those who may have switched to another form of GLP-1, compounded, etc. For the many who’ve stopped GLP-1’s and not ballooned back to their original weight, hearing news that other individuals have had the same experience gives them relief that there’s nothing wrong with them.

 

[CallieKat]

I know regardless of how research is done, regardless of outcomes, there will always be a subset of the population that insists their theory with no data is more valid than any study with data. Covid-19 was a perfect social experiment, we still have individuals who believe bleach can cure the virus within the human body. @Nathanologist made a post about this a couple of weeks ago.

If you actually read the report, out of the 189,000 patients, only 40,000 were included to avoid those who may have switched to another form of GLP-1, compounded, etc. For the many who’ve stopped GLP-1’s and not ballooned back to their original weight, hearing news that other individuals have had the same experience gives them relief that there’s nothing wrong with them.

Where was it explained that they controlled for compounding by taking out 40k people?

 

[50ShadesGreyMarket]

Where was it explained that they controlled for compounding by taking out 40k people?

They didn’t “take out” 40,000 people, they only included 40,000 from the 189,000 that stopped GLP-1’s. There’s more than 10 studies I’ve read so far that all have roughly the same outcomes. My point in posting this wasn’t to say you should ever stop treatment, it was for those who’ve been gaslit into thinking if they stop they will inevitably destroy all the progress they’ve made. It doesn’t have to be all or none, but again, some folks believe injecting bleach cures viruses and the Earth is flat.

 

[CallieKat]

This doesn’t prove your point at all. This is cherry picked data that doesn’t control for anything.

We have multiple properly conducted studies that actually show that you will more than likely regain after you stop.

No one is being gaslit at all into thinking if you stop GLPs you will regain. We all know that the majority will regain and that is truth.

You are gaslighting folks into thinking that quitting is just going to work out for a good portion of people.

I didn’t want to go there and say it but it needs to be said. Sorry if I have upset anyone here. I will go back into my lurky corner.

I’m done with this conversation. I thought there was a real point here but there isn’t.

 

[50ShadesGreyMarket]

Keep in mind, studies funded by corporations that stand to lose lifelong customers report different outcomes than third party data. Look at participant numbers, as well: https://www.bloomberg.com/news/terminal/glp-meta-analysis-refutes-pharma-claims-threatens-investors

 

[50ShadesGreyMarket]

This doesn’t prove your point at all. This is cherry picked data that doesn’t control for anything.

We have multiple properly conducted studies that actually show that you will more than likely regain after you stop.

No one is being gaslit at all into thinking if you stop GLPs you will regain. We all know that the majority will regain and that is truth.

You are gaslighting folks into thinking that quitting is just going to work out for a good portion of people.

I didn’t want to go there and say it but it needs to be said. Sorry if I have upset anyone here. I will go back into my lurky corner.

I’m done with this conversation. I thought there was a real point here but there isn’t.

Nobody’s upset.

 

[YoYoFat]

The problem with cognitive bias is that no matter how much data exists there will always be people who insist the reported outcome must be fabricated. It’s not possible to do a scientific research study that convinces everyone. We still have folks who insist the Earth is flat. 🤷🏼‍♀️

C’mon. You’re literally in a grey community arguing that it couldn’t possibly be grey and compound contributing to these results? I mean, this report conflicts with the actual SURMOUNT clinical study, and as you’ve seen, there are many, many people not on prescribed name brand Tirzepatide, and that isn’t taken into consideration here.

“Of all the people who filled their gas tank at a particular Shell station, 50% never had to refill again and kept driving for years!” as if there aren’t other reasons why they might have been able to keep driving other than that particular gas station…

 

[YoYoFat]

There’s more than 10 studies I’ve read so far that all have roughly the same outcomes.

Post them.

 

[YoYoFat]

There's a pretty good argument that this data is highly biased and not representative of real weight regain after discontinuation.

To collect this data, they queried Cosmos (Epic’s aggregated dataset) for patients with a continuous GLP-1 order >90 days who lost >5 lb, and who had no GLP-1 order in the year after the estimated end of treatment. That's it. It doesn't account for people switching to compounding, or even switching to a different healthcare provider who doesn't use Epic's system. To count as "discontinued" patients could have very well switched doctors, stopped refilling but using old supply, or even have paid in cash for their medication (which means it won't show up in Epic's EHR). Additionally this only accounts for people who later came back and got their weight checked a year later, but that's another story.

Let me reiterate, If a patient switches to:

• A hospital system running Cerner, Athena, NextGen, eClinicalWorks, etc. (Anything except Cosmos)
• A clinic that does not participate in Cosmos
• A telehealth platform that is not integrated with their old Epic chart
• Most importantly, compounding (millions of people switched over during shortage)

Then this study now considers them "stopped"

You can see how the results might potentially be biased.

Also, doesn’t account for someone switching from one med to another. For example, they appear to have looked at people who stop Sema, but doesn’t account for a potential switch to Tirz, or a change to LDN or Qsymia or something else.

 

[MsGizmo]

According to the records of 40,000 patients at Epic, more than 50% of them were able to keep off the weight or continue to lose weight in the 2 years after discontinuation of GLP-1’s. Roughly 20% gained the weight back. This is based on medical records, not self-reported. Regardless of how many studies or reports come out, I still hear people parrot the narrative of Big Pharma that “once you pop, you can’t stop”. I get this may be the case for opioids, but GLP-1’s seem to affect different people differently.

View attachment 9969

Two Years After Stopping GLP-1s, Most Patients Sustain at Least Some Weight Loss

Facilitating rapid sharing of new medical knowledge

www.epicresearch.org

I'm not sure how much we can trust this report. How many of us in the grey market have reported it to our doctors? Officially my doctor thinks I am taking 0.5mg doses of retail Wegovy and not 1.5mg doses of grey market sema. They have no idea that I'm taking 3mg of reta a week as well.

 

[geoguy78]

There's so much variation in how people's bodies and minds work, a cookie cutter mentality about discontinuing GLPs just isn't going to work. So many factors at play in why people gained weight in the first place, that's going to affect the ability to keep it off. Also a lot we don't understand, like "set points" and fat cell memory. Can we retrain our bodies? I see nothing wrong with trying to keep the weight off without GLPs and also nothing wrong with staying on for good. And if you stop and start stacking on the pounds, nothing wrong with starting back up again.

 

[50ShadesGreyMarket]

One of the great things about access to inexpensive GLP-1 drugs is you can experiment with stopping and starting and increasing and decreasing doses as needed. Based on the research, I think most people are going to need to stay on the dose they used to lose the weight, to keep it off, but trying reduced doses or stopping it for maintenance is a easy harmless experiment so long as you don't let weight regain get away from you before restarting it if necessary.

We are on the same page. A huge issue we have with severely obese people, aside from the current price or what’s available, is the fact that GLP’s are vilified in the media and among the cult followers. There’s a noticeable number of young fat influencers who have suffered from disabilities caused or exacerbated by morbid obesity. When we tell them they will never ever ever be able to lose weight and keep it off unless they’re willing to pin every day for the rest of their lives, it results in fewer seeking treatment.

Yes, most people regain weight. Most people eat like raccoons in a dumpster and don’t get adequate exercise, too. I think being willing to have a conversation about how lifestyle changes can help keep someone in a healthier weight range is better than accepting there’s no hope.

 

[50ShadesGreyMarket]

There's so much variation in how people's bodies and minds work, a cookie cutter mentality about discontinuing GLPs just isn't going to work. So many factors at play in why people gained weight in the first place, that's going to affect the ability to keep it off. Also a lot we don't understand, like "set points" and fat cell memory. Can we retrain our bodies? I see nothing wrong with trying to keep the weight off without GLPs and also nothing wrong with staying on for good. And if you stop and start stacking on the pounds, nothing wrong with starting back up again.

I didn’t see anybody claim people should just stop taking GLP’s. I have seen a lot of folks on this forum insist if you titrate down or stop then they will lose effectiveness.