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Mounjaro possibly removed

N

natzmum

Member
Messages
6
Type of diabetes
Type 2
Treatment type
Non-insulin injectable medication (incretin mimetics)
Hi, I wanted to ask if anyone else has had a diabetes nurse say these things re mounjaro. I've tried many medications for my type 2. I'm 64, 5ft 4 and weighed 11 stone 2 when I started mounjaro summer 2024. My bloods were at 64 (no idea what that means) and I was taking jardiance and gliclazide. Neither of which had any effect on my bloods and made me hungrier. Then i was started on mounjaro when first available in gp surgeries. Started at 2.5 and within a few weeks with no noticeable difference I eventually was put on 10mg which suddenly worked for me. Seemed to be the magic number. Now in Jan 2025 I weigh 9 stone 10 and am within normal weight range although at the higher end. More importantly I was told last week that my sugars have gone from 64 to 45 and that, that was prediabetes levels.
I was of course very happy. For the first time in 20 years plus my sugars are under control. I suffer with depression and anxiety and am an emotional eater. Meaning It doesn't matter if hungry or not, I'll eat. Not feeling hungry wouldn't stop me because it usually wasn't about that. Nothing has ever worked to combat that. Mounjaro for some magical reason does. It completely removes the psychological desire which is astonishing to me. What is more it has vastly reduced my desire for sweet things which was a huge problem for me.

All that said, within minutes of telling me the good news she was talking about stopping it completely. Like i'd accomplished a goal and so didn't need it anymore. This is a big shock to me. I've not seen that mentioned anywhere. At worst you are put on a dosage to maintain said accomplishment. Everything i've read says you are kept on it to maintain so you don't put all the weight back on and your sugars rise again. Which will 100 percent happen with me.

She said something about them having a meeting next week to discuss what happens when people reach a weight or sugars goal. They hadn't even thought about it before putting people on it. I haven't even been on it for very long and i am absolutely sure it would all have been a colossal waste of time and money if they just remove it. What do they think will happen to people. I know at the end of the week. The last day or 2 i start feeling hungry again and begin eating. I presume as the mounjaro wears off before the next injection.
Now i don't know for sure if they will remove it but i know at the very least they will reduce it and it was only when i got to 10mg that it had any effect at all. Does anyone know what the recommendations are that during this meeting they are likely to look at and follow? Why would they not start with removing either gliclazide or jardiance to see what happens? I'm really confused and have to admit really worried. I was so excited and happy. I haven't lost a ton of weight like some have and it is still a bit of a struggle but it is a lifeline to me. Not because of weight, i don't care about that, but because my sugar levels have never been this good. None of it makes any sense to me. Anyone have any advice re this or anything like it happened to them? Many thanks.
 
You'll find this interesting and informative, and unbiased
 
TY will take a look
 
Thanks but its not to do with the question asked. What others have found happens when you reach a healthy weight and your sugars are lower because of mounjaro. Are people kept on it to maintain etc? Or like me are they hinting that it will just be stopped soon so that my weight and sugars will rise right back up.
 
From what I can work out from other users on a Facebook Mounjaro for Diabetes page, when they have reached a lower A1c reading and weight, they work out a maintenance dose to keep it going but they stay on it.

Edit: Interesting that the speaker above says 70% of people stop taking MJ after 2 years.
 
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I have just started it, and was told by my nurse, that’s it, on it for life. I’m only on my first months dose, but my doctor is already reducing my Gliclazide in the morning. CGM results show a much smoother reading (before I had a sawtooth pattern meaning finger pricks could be wildly out). Well done on the drop in your levels
 
I was also taken of gliclacide. Just on Jardiance now. My Mounjaro was dropped from the 10mg to a maintenance dose of 5mg 2 weeks ago. My sugars are rising and my eating has gone right back to pre mounjaro. Nothing I can do about it because they're more interested in cost when its via the NHS. So yeah, i am on a maintenance dose but there was no discussion about it. I was just told now i'd reache 8st 7 from 11st 2and 45 re sugar from 65 that it had to be halved. Mounjaro stops you feeling hungry. It doesn't change your eating habits. I have no idea what the point was of being on it in the first place. Had a blood test again yesterday so am waiting to see but my weight is creeping up. Mounjaro is amazing. It also turns off that food noise where some like myself eat even if not hungry. Emotional eating. Nothing else has ever done that. A big gutted to be honest and have no imput into any of it. I've been on it for around 8 months. Not for a long time.
 
perhaps this varies from surgery to surgery - my nurse has said this could be a permanent solution for me and no talk that I might have to come off it at some point
 
Hi, you sound just like me, Im 54, on Metformin and Mounjaro. I weighed 20 stone 10 when i started, have remained on the 2.5mg dose the whole time and i now weigh 18 stone 7, which is still technically obese and without mounjaro i know i will gain weight and that will also affect my hba1c, which is down from 77 to 40. it really isnt all about weight loss for me and i feel like i havent lost loads anyway, but thats ok, my sugars are good.
i have an appointment at the end of Jan and my nurse wants to stop my mounjaro, i have not been happier with my diabetes and it really isnt all about weight loss, but i know my weight impacts my diabetes a lot too.
My anxiety is raging and im terrified of it being stopped, but i think it is all about costing to them. i feel like this has potentially saved my life and given me a future that i otherwise wouldnt have had. I suffer with my mental health too and i have no idea why they would stop something that is obviously having so many positive effects in my life.
 
i have been on a lifestyle programme for a year before mounjaro to help with my emotional eating and i found it no help, they also told me they couldnt see me any more when i was put on mounjaro, i just dont understand sometimes, its not all about weight loss x
 
An update and for me not a good one. They did a few months back reduce my mounjaro for a maintenance dose. They halved it to 5mg. I had that week asked to be put up to 12.5mg from 10mg as the 10 was no longer controlling my eating etc. Instead of that they halved it. I hadn't heard of a maintenance dose that is half the lowest dose that works to maintain. I had gotten to prediabetes levels of sugar on the 10 for the first time in decades. In fact i kept mistakingly kept getting texts from the surgery saying my sugars showed prediabetes and did i want to see someone to prevent diabetes happening. It was amazing. I was taken off gliclazide and was only on jardiance. Then came the 5mg. I warned them i thought it was the wrong maintenance dose for me. Certainly not what the makers suggest but they became quite snippy when questioned etc. Anyway forward a few months to now and I have gone from 9st 2 back up to 11st. My pre mounjaro weight. My sugars have been rising and rising again and all getting back to how it was when I started. I'm angry to be honest. I feel like it's been a total waste of time. They won't even talk about it. What is the point of it if they just stop it or put it to such a low lever for that individual that it all goes back to how it was. Back on the gliclicide as well. If I had the money I'd buy it myself but as always with things that are good for you it is way out of my budget.
 
I was on semaglutide tablets a few years ago, they took me off them to try other things as when i went to the higher dose i got violent stomach pains and felt sick all the time, if they can keep me on that for a prolongued period, what is their problem with mounjaro? why dangle a carrot? Not that im a fan of carrots haha x I am really scared that things will just return to how they were and they wont put me back on it, it makes no sense to me... x
 
I have read that inulin powder can increase the feeling of fullness and therefore lessen the urge to eat. It could maybe be helpful to some people who are adapting either to a lower dose of Mounjaro or having the drug taken away altogether?
 
Did you see the media this past week? There is now some mention you need to remain on a GLP’1 for life. If that isn’t another wind up.

I have put 2 stone on as well after being told to stop (I was paying privately and knew I couldn’t afford the price hike on top and if I lost my work contract not my priority when I last saw DN) I have often wondered what happens when I was buying privately but no one was ever in the know.

Had my blood test Friday for a 3 month review completely off any medication for a period of 3 months for type 2. Between that and the raging up and down home blood glucose prick test levels I really am unsure.

Least it has opened my eyes.
 
I would think that the reason people put on weight after they stop the medication is because they haven't changed the eating habits that made them fat in the first place. What think you.
 
No I don’t think so, I’ve actually kept active and where do you draw the line, paying forever for a medication, that people want to claim save the nhs money but at who’s cost really.

Why was I on Metformin for the best part of 5 years plus, before I took it upon myself to pay for the GLP1 provately.

Yes I have tried to ask questions of my surgery but because they are not a surgery to prescribe but encouraged you to take the older GLP1’s during lockdown there is no answers, convenient for them.

Why one rule for one and another for another. I was only watching an old Michael Mosley documentary other day and to my surprise it featured someone in remission still on medication?!?!

To be clear I kept weight off until as a diabetic in remission who suddenly had metformin just stripped off me, and the surgery started calling me a ‘healthy diabetic despite still having a bmi of 40 with other conditions’ I started suffering diabetic complications, yes I nearly had my leg amputated sadly not made clear until the 4 month follow up (a surgeon backs me up)
My gp surgery currently can’t be bothered to read notes from other professionals it seems.
 
And to add it is only in the last 6 months I have been put on antidepressants with a dose increase (of course they don’t contribute to weight gain or again is that dependent on who you are?)
 
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