For the type 1s only please (mounjaro)

Scrumbling said:

Hi - I've been taking this since April (I pay for it privately, but DID inform my diabetes team that I was doing it). I'm T1 and similarly to you, my weight was increasing for no reason - I even went on a fully supervised 1000 cal/day diet, 20g max of carbs, and exercise for 3 months and lost nothing! It's so demotivating!!!

Since taking Mounjaro, my weight has reduced from 13st 7lbs to 10st 12lbs. I'm eating no differently, but the biggest benefit is that I'm not constantly thinking about how hungry I am! It shuts off the 'noise' we get (and as diabetics it's been documented we can struggle with this big time!)

My advice would be to stay on the lowest-dose possible. I went from 2.5mg to 5mg ok, but when I moved to 7.5mg I was really unwell - agonising heartburn, stomach issues, vomiting etc. I'm back on 5mg again, and feel much better, and continue to lose weight (albeint more slowly). I will shortly be reducing back to 2.5mg for maintenance.

My blood sugars have been great throughout, and I've reduced my TDD from around 45ui to 15-20ui (I'm on a pump). As an unexpected side-effect, my skin is also completely clear - I suffered for years with painful breakouts that I believe were related to PCOS (Metformin barely touched it), and now my skin is completely clear!

I would recommend it, but using caution. Go slowly, adjust properly, and make sure you eat enough protein to reduce and chance of muscle loss etc.

You have my full sympathy, as it feels like no matter what we do, sometimes we're banging our heads against a brick wall. This SHOULD be offered to ALL diabetics who need it

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hello,

i am in a similar boat to you on my weight loss journey and not getting anywhere, i am type one and would be interested in this to help me. Just wondering the best place to get it from? - i will check with my DB team first. i thought if i entered i was type one online it wouldnt give me it.

Thanks

You star! thanks for replying and giving me belief in this, ive read so much on it and i think its just a matter of time before it is here but the system is so slow at getting it approved. i am on a closed loop pump and hit 40's and no matter what i do my TDD and hormones just make it impossible to shift the few stone ive carried for 10 years. Ive tried everything, slimming world, personal trainer, etc nothing works.

Just hearing someone who has done it makes me feel better - i will start slow and steady- im not bothered if its quick tbh. Do you get any more hypos that what we normally have to contend with just with a normal week? are they worse?

Thanks

Edited by mod to remove quoted post that has been deleted

Oh bless you - I completely get it! I'm 44 now, but have struggled with an additional couple of stone since diagnosis - hormones, insulin resistance, whatever - nothing I did (including a supervised 900 cal/day no-carb diet!) did anything! I honestly believe that T1 affeccts so much more, and it's not just a case of 'eat less and move more' (I actually lost weight on Mounjaro eating MORE than the 900 cals a day!)

I'm also on a closed loop pump (Omnipod 5 and Dexvom). Tbh, I didn't notice a lot of hypos, BUT keep an eye on your ratios as your sensitivity will likely improve. My blood sugar is rarely over 12mmol now (and that's ehen sick/after diner/forgot insulin etc - I have 2 teenagers, a menagerie of pets and work full time, so easy to forget!)

I started on the 2.5mg for a month - noticed my appetite reduce, but didn't lose much - prob a couple of pounds. However, I felt in a much more positive mindset knowing I was doing this and was confident it would work (I watched a LOT of YouTube videos and read a lot of research etc)

From month 2 I moved to 5mg, and then month 3 they moved me to 7.5mg (it goes all the way to 15mg!). However, the 7.5mg gave me horrible side effects, and I struggled keeping food down, had terrible acid reflux, and fainted several times! I switched back to the 5mg, and have been on that ever since, so trust your body, and don't let anyone push you up a dosage - if it's still working, stay as low as you can. This is where I think the difference is for us compared to non-diabetics! I've seen people go all the way to 15mg but no they have other health issues, they're taking it only for obesity. For a lot of T1s looking into it, it's like we need a minimal amount to see the benefit, and once it's in our systems it reflects the effort we've put in over the years as we're already eating less calories/carbs/exercising - it's just diabetes and hormones are against us!

Happy to help in any way I can - to be honest, I was really surprised my DSN was onboard with it, but as I said, he's considering it himself and also said it should be available to all Diabetics who could benefit (and thinks it will be eventually!). The issue with T1 is that they didn't do a big enough study in order to get approval (we're a more complex bunch ), so biggest bang for their buck was to take the easier route with T1. However, my consultant HAS started conservatively prescribing it for a couple of patients (although their BMIs are cosiderable to justify it being 'off-label'.

I started out at 13st 7lbs, and am maintaining at 10st 4lbs-10st 7lbs (I'm 5' 9" so this puts my BMI bang on in the middle!).

so nice to read thanks for taking the time - i have 3 pre - teens and work full time too, its just relentless isnt it, i do think we do more than most to keep healthy and get little rewards for doing it- a tool to aid me would be beneficial! i think if my TDD went down i would feel the benefits too, not just weight loss.

Im on ypso med (camaps) and DEXcom 6, its been amazing since ive had it - and i guess it will help you with the hypos more and help those lows if they do happen. yeh i read about the studies, im sure they will come eventually... however, like you, i think we know our bodies though and i know i can start slow and see how i go.

Im 5ft 11 - got about 4 stone to lose! i would happen with 2 at this stage

Im going to ring my DSN now

Fingers crossed for you!

LisaGT said:

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

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I'd be really interested to know which health authority you live in. I took Liraglutide off licence (I have T1) for a couple of years until supplies ran out. My consultant asked my GP to prescribe Mounjaro but then he retired last summer and a registrar, purportedly in consultation with the head of diabetes at my hospital, told my doctor NOT to prescribe it because of the risk of DKA. I'm furious because all the weight I'd lost with Liraglutide has gone back on. I'm severely disabled with a ton of pain so exercise or physical activity of any kind is almost impossible. The fantastic control of my blood glucose I'd achieved has gone to pot and is getting worse. I've never had a ketone once in the nearly 40 years I've had diabetes and I can find no reference in any material relating to Mounjaro to a risk of DKA. I've searched reports and everything I can find listing contraindications and nothing: not one mention of a risk of DKA. So I've no idea where that's come from. I'm trying to fight this short-sighted attitude as, if I can't shift the weight to get the hip replacement I desperately need and can't get my diabetes back under control I face even worse health implications (which will cost my surgery dearly in the long run) and be lucky if I see more than another 10 years.

Has anyone else come across this ridiculous position? Are there other T1s currently being prescribed Mounjaro in the UK? I'm really curious to know how others are faring.

SW said:

I'd be really interested to know which health authority you live in. I took Liraglutide off licence (I have T1) for a couple of years until supplies ran out. My consultant asked my GP to prescribe Mounjaro but then he retired last summer and a registrar, purportedly in consultation with the head of diabetes at my hospital, told my doctor NOT to prescribe it because of the risk of DKA. I'm furious because all the weight I'd lost with Liraglutide has gone back on. I'm severely disabled with a ton of pain so exercise or physical activity of any kind is almost impossible. The fantastic control of my blood glucose I'd achieved has gone to pot and is getting worse. I've never had a ketone once in the nearly 40 years I've had diabetes and I can find no reference in any material relating to Mounjaro to a risk of DKA. I've searched reports and everything I can find listing contraindications and nothing: not one mention of a risk of DKA. So I've no idea where that's come from. I'm trying to fight this short-sighted attitude as, if I can't shift the weight to get the hip replacement I desperately need and can't get my diabetes back under control I face even worse health implications (which will cost my surgery dearly in the long run) and be lucky if I see more than another 10 years.

Has anyone else come across this ridiculous position? Are there other T1s currently being prescribed Mounjaro in the UK? I'm really curious to know how others are faring.

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I found this online - The risk of DKA is highlighted part way down https://www.diabetes.org.uk/about-d...o with,diabetic ketoacidosis, also called DKA.

Hopeful34 said:

I found this online - The risk of DKA is highlighted part way down https://www.diabetes.org.uk/about-diabetes/looking-after-diabetes/treatments/tablets-and-medication/glp-1/mounjaro#:~:text=If you take Mounjaro with,diabetic ketoacidosis, also called DKA.

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But it says the risk of DKA is with high BG if you reduce your insulin too much.
High BG in T1 always means a risk of DKA and a sign to do a correction and perhaps adjust your basal.
So how is this different with Mounjaro than without?

(from your link)
"If you take Mounjaro with insulin, and your insulin is reduced too quickly it can cause high blood sugar levels, this is called hyperglycaemia, and there is an increased risk of diabetic ketoacidosis"

Antje77 said:

But it says the risk of DKA is with high BG if you reduce your insulin too much.
High BG in T1 always means a risk of DKA and a sign to do a correction and perhaps adjust your basal.
So how is this different with Mounjaro than without?

(from your link)
"If you take Mounjaro with insulin, and your insulin is reduced too quickly it can cause high blood sugar levels, this is called hyperglycaemia, and there is an increased risk of diabetic ketoacidosis"

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It isn't. I was just wondering if that's what the dr had read, maybe in a rush?

Hopeful34 said:

It isn't. I was just wondering if that's what the dr had read, maybe in a rush?

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This makes perfect sense to me.
Worth asking again with this piece of information, @SW .
Good luck!

Kaydee59 said:

I am on jardiance and have been for years. Originally diagnosed as Type 2, but was actually Type 3C. (Had two neuroendocrine tumours in my pancreas). After surgery to remove my pancreas and spleen, they have still kept me on jardiance and metformin as well as novorapid and tresiba. I have had no issues being on jardiance

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Really interesting that you are a 3c ( like me, but different as for me my pancreas was just built different in a non ideal way) I was told by my endo that i am not allowed any of these newer medications other than insulin, as they all massively increased the risk of pancreatitis. Really good to hear that it is going well for you - gives me hope that more research for 3c's will be done

Peanut234 said:

I was told by my endo that i am not allowed any of these newer medications other than insulin, as they all massively increased the risk of pancreatitis. Really good to hear that it is going well for you

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With @Kaydee59 having had their pancreas removed there is no risk of pancreatitis of course.
I completely agree with you on more research on T3C, and I'd add how good it would be if more professionals in the medical field would be aware of this type of diabetes. It's all too often that a forum like this one and other social media are needed to eventually lead T3C's to a diagnosis when their HCP's have no idea even if the signs stare them right in the face.