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Mounjaro Backwards Spiral

S

suzanna valentine

Member
Relationship to Diabetes
Type 2
Hi,
Can't find a post I made a long time ago so making a new one as in desperate need of advice. I was put on Mounjaro months ago. Nothing had ever worked for me to lower sugars or to help with weight. I suffer with depression and an anxiety disorder which is severe so I am an emotional eater. I don't have to be hungry to eat. Started on 2.5mg Mounjaro and went up to 10mg. That was the first dose that actually started doing something. The lower ones made no impact. I stopped not only feeling hungry much but more importantly (and I don't know how) it seemed to turn off that eating ping with emotional eating. I no longer even thought about food much. Within a few months my sugars went from 16 on my sugar monitor to pre diabetes. From 65 to 45. I even got a text from the surgery advising me I was pre diabetic and to make an appt to ensure I didn't become diabetic (case of the right hand not knowing what the left hand was doing). Anyhow, I was ecstatic. Pre diabetic levels. I felt healthier, less tired etc. However, the 10mg stopped working after a time in regards to my eating which was beginning to return to pre mounjaro. I asked for it to be raised to 12.5 and gave the reason why. That isn't what happened. My diabetes nurse became quite sharp with me via text. (I rarely get a face to face diabetic review. Mainly get a blood test and never get to see anyone). Instead of raising the dose to stop my sugars rising, she halved it to 5mg.

I asked to have a meeting at least to discuss where i was coming from and to put my worries and thoughts as I knew 5mg would be the same as taking nothing from previous experience. I thought they would want to do everything possible to ensure this amazing news of prediabetes levels would stay. That it would save the NHS money, save me worry and save my health. At the very least I thought my 'maintenance dose' would be the 10mg as it was no longer making me lose weight and would to me be the best maintenance dose. I've looked online and I can't find anyone whose dose was halved or whose maintenance dose is half the dose they were on.

In the past few weeks since halved I have put back on over half the weight I lost. I've gone from 9st 2 (I'm 5ft 3) in the healthy weight range to 10st 3. Half of what I lost in just a few weeks as my emotional eating is back with a vengeance. I started at 11st 2 pre mounjaro. My weight is continuing to rise so in another few weeks I will be back to where I started. A total waste of time. My sugars are also rising and rising heading back to where they were. I keep trying to talk to my diabetes nurse who gets very sharp with me and says things like 'the nhs doesn't give it for weight loss only!!). I've told her time and time again my sugars are rising fast. She doesn't even really speak to me and I have to look into my online notes to see what she is thinking etc. All I see is patient is upset at maintenance dose-patient is to remain at 5mg.

I'm a lay person. I'm not medically trained but it makes no sense to me. I could have told them and I did that halving the dose when 10mg was no longer working would lead to sugars rising and weight gain. That the optimal maintenance for me is 10mg. I stopped losing weight with it and it was maintaining sugar levels at pre diabetic.

I'm not even sure what my question is. I'd love to hear from anyone in the same situation or anyone who can give advice. I've gone from amazed, happy and so much healthier to tired, depressed and on tablets jardiance and gliclacide that have never worked for me. My sugars were at 64 taking them. They didn't and don't work but nobody will even see my face to face let alone listen to me. I don't know what to do. I don't care about weight. I've told them that. I care that my sugars were pre diabetes and now they're spiralling up so fast my head is spinning.

Has this happened to anyone else?
 
I have no personal experience of your situation (other than the continuous food noise in your head). I feel your pain with that one. What I do know however is the recommended maintenance dose of Mounjaro is 15mg, so at 10mg you still had a way to go before you actually hit the maintenance dose.

Go and get another opinion. If you only have one diabetes nurse at your practice, book an appointment with your doctor. You can prove the higher dose was working so I truly can't understand why they would drop you down, unless there was an urgent clinical need.

I started Mounjaro (self-funded) and it did nothing for me at 2.5 and 5mg doses so I stopped it because I had side effects I couldn't live with. From talking to other people and hearsay, the majority of people say it doesn't kick it properly until you are on the higher dosage.

Good luck xx
 
Nobody here is medically qualified or familiar with the specifics of your situation but having said that my guess is that your nurse is a moron.

I'd say you should check who to complain at your practice to complain to & how to go about it. In general, I guess this would include a succinct, unemotional statement of the facts, with a record of eg your BG readings over time referenced to when you started on Mounjaro & when your dosages changed. If you're not achieving glycemic control with 10mg then all indications are that you should keep titrating up to 12.5mg or 15mg - https://www.medicines.org.uk/emc/product/15484/smpc
 
Eddy Edson said:
Nobody here is medically qualified or familiar with the specifics of your situation but having said that my guess is that your nurse is a moron.

I'd say you should check who to complain at your practice to complain to & how to go about it. In general, I guess this would include a succinct, unemotional statement of the facts, with a record of eg your BG readings over time referenced to when you started on Mounjaro & when your dosages changed. If you're not achieving glycemic control with 10mg then all indications are that you should keep titrating up to 12.5mg or 15mg - https://www.medicines.org.uk/emc/product/15484/smpc
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That's what I thought but instead they've halved it to 5mg the day I reached pre-diabetes level. 10mg might have controlled and maintained it at least. I can't find anyone who has had it halved. There is nobody else, the diabetes nurses at the surgery have control of it all. Can't even speak to one of the GP's about it.
 
suzanna valentine said:
That's what I thought but instead they've halved it to 5mg the day I reached pre-diabetes level. 10mg might have controlled and maintained it at least. I can't find anyone who has had it halved. There is nobody else, the diabetes nurses at the surgery have control of it all. Can't even speak to one of the GP's about it.
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Maybe give the Diabetes UK helpline a call? Perhaps they can give some advice on how to escalate your concerns.

Or can you just change GP practice? That's what I'd do, here in Oz, plus maybe do some one-star Google etc reviews. but things seem to work differently there.
 
suzanna valentine said:
That's what I thought but instead they've halved it to 5mg the day I reached pre-diabetes level. 10mg might have controlled and maintained it at least. I can't find anyone who has had it halved. There is nobody else, the diabetes nurses at the surgery have control of it all. Can't even speak to one of the GP's about it.
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The diabetes nurse cannot physically stop you booking an appointment with the doctor. This would contravene all sorts of GDPR/Privacy/Data Protection guidelines and legislation. You are also under NO obligation to tell the reception staff what you are booking the appointment for.

Just an FYI, the actual cost between the 5mg and 10mg dose is exactly the same (at least it is on a private prescription) so I don't think money has been a deciding factor.

Try and speak to the GP first. Alternatively put your concerns in writing to the practice manager. You have to advocate for yourself.
 
As Eddy Edson and others suggest: have you sent a message to your DN stating 5 mg does not work, and asking to try 12.5 mg as 10 mg stopped working before?
 
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