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Doctor wants to stop my mounjaro - what are the official guidelines?

Hi

Ive been on Mounjaro 2.5mg for about 5 months, I started out with Hba1c of 77 and weight of 20 stone 10, I am now 18 stone 7 and my Hba1c is 40.
My nurse has just made an appointment for the end of January to bring me off Mounjaro.

I understand the correlation between my weight, which I struggle with badly and have done for many years, and my Hba1c, and after trying several different drugs, Semaglutide tablets never worked for me and Canigliflozin gave me terrible side effects, Mounjaro has changed my life, I am able to eat better and my glucose control is very good.

Ive just seen this on the BBC, so how this will affect things i have no idea

www.bbc.co.uk

People coming off weight-loss injections risk fast weight gain

Overweight people shed large amounts on jabs but gain 0.8 kg a month on average once off them, study shows.
www.bbc.co.uk www.bbc.co.uk
 
Bogs said:
So I complained to the GP. I was then sent a referral to a diabetologist in a special clinic in my area. That was so worth doing! The diabetologist has kept me on 5mg Mounjaro, also put me back on Metformin (as the GP had also taken me off that) and also kept me on Dapaglifozin. She said that in someone diagnosed so young (42) with T2, I needed this and really explained why. She was really scathing of the GP surgery and wrote to them suggesting further diabetes training!! No apology from GP, but they are prescribing the Mounjaro until the end of this month when they want another set of bloods. Will see if I'm back to pointing them back to the diabetologist recommendations after that. She did say that 36mmol was a bit low, so hoping the MJ reduction + Metformin reduction + Christmas eating, puts the reading above 40mmol or she said would need to drop the MJ to 2.5mg.
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Hi, just been searching for answers for this. I’m nervous for my next appt because of the same thing.

Prescribed Mounjaro when my numbers were in the 80s. I was also 20+ stone. 10 months on 5mg and I’m now 13 stone and my numbers are in the non diabetic range.

I’m scared that they will stop the meds and feel like I need the right things to say to stop them doing this. I’m 40, diagnosed T2 when I was 35. Gestational diabetes in 2 pregnancies when I was 30 and 33.

Any tips would be appreciated. Thank you
 
There is a very useful publicly available resource that allows us to compare prescribing data.
You can compare your region with others and even drill down to compare your GP practice with others.
Two things stand out.
Mounjaro prescriptions are Increasing across all regions and most GPs
Massive differences - a real postcode lottery.
Prescribing data shows that some GPs prescribe Zero. Some 30x as much as the average. The resource allows comparison taking into account the list size so it is a valid comparison.
Some doctors insist on backup consultation with specialists.
Try investigating here https://openprescribing.net/analyse...ZBB&denom=total_list_size&selectedTab=summary
 
The OP of this thread asked about official guidelines for stopping the Mounjaro prescriptions. The following article has some info on page 15. “Patient monitoring, reviewing and stopping”.


Apparently, according to the article, there are no official guidelines for stopping. To quote from info in the link

“Mounjaro does not have a set stopping rule, or maximum treatment period, allowing for indefinite prescribing.”

This suggests that it is up to individual patients and their prescribing clinician to consider all circumstances when deciding on whether or not to continue.

I have only scan read the article, but there are many interesting points. A Few I picked out of personal interest include:-

The phased implementation to those patients with highest clinical need.
The need for ‘wraparound care, including advice on nutrition, diet, behavioural change being mandatory.
The medication being a ‘Black Triangle Drug’.

The fact that it is a ‘Black Triangle Drug’ could be another reason for the phased introduction, aside from the cost implications to NHS. I.e. it is a new treatment which has not had longitudinal study to assess any long term ill effects. As someone who has previously been prescribed ‘cures’ for my obesity, including Tenuate Dospan, (amphetamine) and Orlistat (prevents absorption of dietary fats) which caused me adverse effects, I would be very wary about starting any weight loss drugs. Particularly any ‘Black Triangle’ meds. Of course we each have to do our own, personal evaluations and risk assessments in making our choices, and some will still be restricted by Integrated Care Boards, and individual clinicians in how they interpret the criteria set out.

*Edited to remove reference to previously edited post and to provide clarity . Pipp.
 
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I am very confused too. I was put on Mounjaro by the Endocrinologist who I had been referred to for my diabetes. She tried various medications which didn't help (including insulin). After working up to 10mg since August 2024, I lost 3 stone and my last HbA1c was down to 36 from 79. When I asked the Endocrinologist how long I should stay on MJ she said I would stay on Mounjaro for life as if I stopped my blood sugars would eventually rise again and I would probably gain weight again.
Fast forward a few months to an appointment with the Diabetic Nurse at my practice, who praised me and then said that I would now have to come off MJ. I advised that the Endo had said I should stay on it but as the Endo hadn't sent a recent update letter, I asked her to send through a letter to my practice to confirm I should stay on MJ.
In the meantime the nurse spoke to my GP (who knows me well) who said I can stay on 10mg.
Then, to my shock, the Endo wrote a letter saying the complete opposite to what she had verbally told me and said that I could ween off MJ or at least stay on a low dose and that she wasn't a dietician and couldn't comment on the weight situation. I wrote back to her saying that I was very confused as she had told me the opposite during our previous meeting and I haven't heard anything else, she has blanked me! Just waiting to see what my GP will do now :banghead:
Basically, I don't think they know what they are doing yet, as Mounjaro has been so successful for many T2Ds but they don't have the evidence for very long time use on this particular product. The other GLP's have been around for 20+ years and the diabetic nurse says they stop working. I cannot see the point of yo-yoing up and down taking MJ getting your HbA1c and weight down and then going back up again and starting all over again.
 
Some people need to use Mounjaro as a weightloss drug. In addition to or instead of using it as a diabetes med.
Therein lies a problem.
Seems that some prescribing clinicians are interpreting the guidelines to mean that once diabetes is controlled and / or the weight has dropped, medication should be stopped.

Edited to remove quote of deleted post and for clarity of meaning.
 
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ch.83 said:
I have been on mounjaro for diabetes since April 2024.

I am not on any other medication.

My hba1c was 68 when I started. It is now 38.

Everything is going great.

Last night I received a call from my doctors surgery to say they are going to stop my mounjaro because my hba1c is normal.

My hba1c is only normal because of the mounjaro. Why can’t they see this?

What are the official UK guidelines for stopping mounjaro for this reason?

They wouldn’t take you off metformin, or off statins or blood pressure tablets, so I am very shocked they want to stop my mounjaro.

Thank you.
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Hi I hope you're well.

I've have also been told the same. I totally disagree with this decision as you are playing with people lives here should this drug not be taken off gradually because the after effects can be quite difficult and alarming. I also need help and guidance on how to stay on the drug for just a little longer so I can prepare myself mentally/psychological and physically when I come off the drug.
 
Mods have had to delete a number of posts in this thread as they were taking it way off topic, the OP question was

Doctor wants to stop my Mounjaro - What are the Official Guidelines?

We appreciate that there was some very useful information & personal experiences shared but the topic wasn’t about the merits, downsides & side effects of Mounjaro. Members are welcome to start a new thread on the merits, downsides & side effects of Mounjaro, as long it is from personal experiences or any claims have reputable links.
 
Pipp said:
Some people need to use Mounjaro as a weightloss drug. In addition to or instead of using it as a diabetes med.
Therein lies a problem.
Seems that some prescribing clinicians are interpreting the guidelines to mean that once diabetes is controlled and / or the weight has dropped, medication should be stopped.

Edited to remove quote of deleted post and for clarity of meaning.
Click to expand...
This is the exact response i have had from my GP. Been on Mounjaro since April last year and my HBA1C has reduced drastically. I was an uncontrolled diabetic for many years and have bad peripheral neuropathy as a result. Yes i have lost nearly 4 stone but my GP now says i dont need the medication. I asked why and she said because there are other people who need it ! I used to be on 2 lots of insulin 4 times a day and glicazide. Now off everything apart from the mounjaro . It has worked wonders for me but now i am concerned what will happen as she wont be prescribing it anymore. I thought it was medication for diabetics , silly me !
 
nursekate223 said:
This is the exact response i have had from my GP. Been on Mounjaro since April last year and my HBA1C has reduced drastically. I was an uncontrolled diabetic for many years and have bad peripheral neuropathy as a result. Yes i have lost nearly 4 stone but my GP now says i dont need the medication. I asked why and she said because there are other people who need it ! I used to be on 2 lots of insulin 4 times a day and glicazide. Now off everything apart from the mounjaro . It has worked wonders for me but now i am concerned what will happen as she wont be prescribing it anymore. I thought it was medication for diabetics , silly me !
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I suggest you look at the information I provided in the post earlier in the thread, @nursekate223. Particularly the part about ‘Patient monitoring, reviewing and stopping’.

If I were to be in the position of having a useful medication withdrawn, I would be looking at legislation to support my belief that it was the wrong decision for me, and using it to build my case to remain on it.

Post in thread 'Doctor wants to stop my mounjaro - what are the official guidelines?'
https://www.diabetes.co.uk/forum/th...e-the-official-guidelines.210130/post-2792930
 
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