For the type 1s only please (mounjaro)

[Dudette1]

Hi guys,

My endo has just prescribed me mounjaro and I was wondering if any type 1s on here take this and how you have got on, low bloods? Weight loss? Side effects, I know everyone will be different, I’m just wanting to know if we can manage while on insulin.
Thank you

 

[Zhnyaka]

why did your doctor prescribe you a medicine that has t1 listed in the contraindications?

 

[Fairygodmother]

Read https://www.accessdata.fda.gov/drugsatfda_docs/label/2022/215866s000lbl.pdf

 

[Dudette1]

England.
I’m assuming they would not prescribe it me if they weren’t allowed.

 

[Tony337]

contraindication is a word i have never come across...

Tony

 

[Dudette1]

Tirzepatide Significantly Reduces HbA1c, Body Weight in Type 1 Diabetes

A new proof-of-concept observation study reports the dual GLP-1/GIP agonist's positive efficacy and safety for adults with T1D.

www.hcplive.com

I’m having a read of everything and anything before I decide to take it or not.
I want a lengthy conversation with my endo as it was a phone call and she wants to go through it all with me and suggested close monitoring.
Not much has been known with type 1 hence my reluctance.
I’ve read a few type 1s on Reddit use it but I prefer this forum and don’t use Reddit.

 

[Fairygodmother]

Maybe, just maybe, so far no one in this T1 community has stepped forward to share their experience of mounjaro, is a sign that it’s very very rarely given to a T1.
Are there any other ways that you could address the issues your endo prescribed it for?
Perhaps some of us have also had these issues and found ways to deal with them?

 

[Dudette1]

I have addressed every issue regarding weight, they are telling me it’s not insulin,
for someone who eats very little, 3 meals a day mainly yogurt, 2 slices of toast, and on a good day maybe a roast dinner.
The dietitian’s have nothing to say to me, again saying it’s not insulin that causes weight gain.
I take 5.5 tresiba and throughout the day around 10 units of nova rapid.
I also exercise 2 hours a day but my weight keeps climbing
I was diagnosed as type 2 in 2018 at 17 n half stone, drastically reduced carbs and over 2 years lost 7 stone.
Kept that off and was happy for 2 years,
then my blood started creeping up and the doctor prescribed empag, and I went into Euglycemic DKA in a matter of 2 weeks.
There excuse for me losing weight was because I was in DKA
I refuse to believe this as I had 2 years where my weight came off by diet and exercise, felt better than ever, I wasn’t in DKA for 2 years and I didn’t lose anymore when I became ill and went into DKA.
I can cope being diabetic doesn’t bother me at all, it’s the weight it’s created!

 

[Dudette1]

https://www.reddit.com/r/diabetes/comments/1bp8lie
One of the Reddit threads

 

[oldgreymare]

Hi @Dudette1, are you UK based or in another health system?

I have had anecdotal feedback from a GP friend that Wegovy ( the similar GLP-1 agonist approved for T2 treatment in the UK) can be well tolerated. The mechanism of action on BG levels is not well understood, but may be mostly due to the appetite suppression effects of GLP-1 agonists - whether this secondary only to weight loss, or is due to another direct hormonal effect is still to be clearly determined.

I believe that Mounjaro is still under consideration by NICE to recommend for NHS treatment of T2, haven't seen any information regarding use (experimental or otherwise) for UK T1s.

 

[Fairygodmother]

Have the ‘proper randomised control trials’ been conducted yet as advised in this response to Colorado Uni’s research?

Study evaluates the use of tirzepatide in overweight/obese adults with type 1 diabetes

A new study in the peer-reviewed journal Diabetes Technology & Therapeutics (DTT) evaluated the use of tirzepatide in overweight/obese adults with type 1 diabetes.

www.news-medical.net

 

[Fairygodmother]

I’ve just found this which says JDRF has funded the research. (2023) Has anyone seen JDRF’s reaction to the results?

 

[biscuitpixieuk]

Hi guys,

My endo has just prescribed me mounjaro and I was wondering if any type 1s on here take this and how you have got on, low bloods? Weight loss? Side effects, I know everyone will be different, I’m just wanting to know if we can manage while on insulin.
Thank you

I’m also type 1 and UK based, I was given Ozempic last year as I’m overweight and have high insulin resistance. I had amazing results on it, I lost 2 stone and my hba1c was perfect.
Then I couldn’t get hold of my Ozempic anymore due to the shortage. Within a month I put back on the weight I’d lost and my blood sugars were raging again.
My endo gave me Mounjaro to try instead. At first it gave me terrible anxiety so please be aware this may happen but it does go away!
I’m on 5mg but debating upping to the next dose soon. I feel less nauseous on mounjaro compared to ozempic.
The weight loss and better control took a while to kick in but it is finally happening.
I think the key is patience with Mounjaro plus close monitoring, I am getting a lot of hypos but having a CGM helps with this as does doing the DAFNE course so I can adjust my doses confidently.

 

[Cumbrianjudith]

Have you come across the American diabetes news online magazine/ organisation Diatribe..early July ( and other recent issues) they had an article reviewing these varying weight loss injectables from the point of view of type 1 diabetics. In general they were marketed, and licensed in the US to Type 2s because there were problems in early trials with some hypos with type 1s ( generally older women with pumps) and it was easier to carry on their development with the much larger group of type 2s. But some type1s are being given them off script, just had to be aware of side effects esp.hypos, but they worked as drugs no problem. A few weeks ago I posted on the site asking if anyone ( type 3c or type1) had tried another drug marketed for type 2s, Jardiance, and did not get any replies at all!

 

[geoander]

Hi

I have been using it for the last two months and two things have happened my control is the best it has ever been and I have lost weight. When using Mounjaro I need to make myself eat 3 good meals a day generally just smaller quantities. the one thing I have noticed is that it delays my jelly babies going into my system so treat at 4.5 if it going low. Happy to answer any questions

 

[stualdino]

Hi guys,

My endo has just prescribed me mounjaro and I was wondering if any type 1s on here take this and how you have got on, low bloods? Weight loss? Side effects, I know everyone will be different, I’m just wanting to know if we can manage while on insulin.
Thank you

I am Type 2 but insulin dependent, I currently take Abasaglar and Humalog and have been on Mounjaro now for 4 weeks and my appetite has reduced a lot as in main meals not weighed myself yet till end of this week but I can see a difference. Only issue I have is sometimes I get a sick feeling and a hollowness in my stomach but that will be from my stomach not being used to having more to do I suppose.

 

[LisaGT]

Hi guys,

My endo has just prescribed me mounjaro and I was wondering if any type 1s on here take this and how you have got on, low bloods? Weight loss? Side effects, I know everyone will be different, I’m just wanting to know if we can manage while on insulin.
Thank you

Hello

I have been T1 for 35 years, use the Omnipod dash and have been taking Mounjaro for 4 months for weight loss.

I’ve lost two stone, feel so much better and my blood sugars have never been so good. My HbA1C has always been very difficult to control and finally I feel like I’m getting somewhere.

My (NHS) consultant was clear that it is not contraindicated but that I would to be very careful re lows. I use the DexCom G7 and it’s taken some adjusting but I’m on far less insulin and have days when I don’t need to bolus at all.

I have a private prescription, but it was clear to me in the first week of taking it that offering a low dose to T1s struggling with HbA1C would be of huge benefit for many of us, and ultimately prevent many of the issues that we all know can come with high glucose.

Good luck with whatever you decide. For me it’s been like finding the missing key.

Lx

 

[Lissia]

I have addressed every issue regarding weight, they are telling me it’s not insulin,
for someone who eats very little, 3 meals a day mainly yogurt, 2 slices of toast, and on a good day maybe a roast dinner.
The dietitian’s have nothing to say to me, again saying it’s not insulin that causes weight gain.
I take 5.5 tresiba and throughout the day around 10 units of nova rapid.
I also exercise 2 hours a day but my weight keeps climbing
I was diagnosed as type 2 in 2018 at 17 n half stone, drastically reduced carbs and over 2 years lost 7 stone.
Kept that off and was happy for 2 years,
then my blood started creeping up and the doctor prescribed empag, and I went into Euglycemic DKA in a matter of 2 weeks.
There excuse for me losing weight was because I was in DKA
I refuse to believe this as I had 2 years where my weight came off by diet and exercise, felt better than ever, I wasn’t in DKA for 2 years and I didn’t lose anymore when I became ill and went into DKA.
I can cope being diabetic doesn’t bother me at all, it’s the weight it’s created!

I’m a little confused, your profile says type 1 but in your post you said you were diagnosed with Type 2 diabetes in 2018 at 17.5 stone.
I have LADA diabetes and I’m insulin dependent, as for the insulin My Diabetes specialist says that insulin is a hormone, whether naturally produced or syntheticly made it’s still a hormone and it can indeed cause weight gain, I think the dietician is incorrect in what they’ve said and it may be beneficial for you to request to see a Diabetic Specialist consultant.
Dieticians are just that, dieticians, they’re not endocrinology specialists , ask to be referred back to a proper specialist that way you may get some answers that make sense.
beat of luck.

 

[Cumbrianjudith]

Today part saw ( bulk behind paywall) article about US Gp tests re. ozempic v Mounjaro …seem to conclude Mounjaro works as well but patients had heard of Ozempic so was more about persuading patients they would do as well on less well known drug.

 

[Dudette1]

I’m also type 1 and UK based, I was given Ozempic last year as I’m overweight and have high insulin resistance. I had amazing results on it, I lost 2 stone and my hba1c was perfect.
Then I couldn’t get hold of my Ozempic anymore due to the shortage. Within a month I put back on the weight I’d lost and my blood sugars were raging again.
My endo gave me Mounjaro to try instead. At first it gave me terrible anxiety so please be aware this may happen but it does go away!
I’m on 5mg but debating upping to the next dose soon. I feel less nauseous on mounjaro compared to ozempic.
The weight loss and better control took a while to kick in but it is finally happening.
I think the key is patience with Mounjaro plus close monitoring, I am getting a lot of hypos but having a CGM helps with this as does doing the DAFNE course so I can adjust my doses confidently.

Hi thank you for the response, did you reduce your insulin right away yourself? I’m just debating if to reduce my tresiba to 5 units in a morning instead of 5.5. Then just take it careful with my nova rapid.
Thanks