For the type 1s only please (mounjaro)

[Nanaclaire]

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

Hi I have been put on mounjaro recently I’ve been on it 8 weeks now, the first 4 weeks you go on he low dose. I have experienced side effects Nausea, headache and low blood sugars my GP knocked my insulin way too low hence highs but I started to tweak it myself, I’m now on the next level of it of mounjaro and I’ve got my insulin level ok etween 5-7. I still have the odd nausea feelings & definitely eating less. Slow weight loss but I can’t exercise due to osteoarthritis & waiting for a replacement knee. The only other side effect I have with it is diarrhoea (hope I’ve spelt in right which only happens for a day or so when you takes the mounjaro. Hope can cope with it

 

[Dudette1]

Hi I have been put on mounjaro recently I’ve been on it 8 weeks now, the first 4 weeks you go on he low dose. I have experienced side effects Nausea, headache and low blood sugars my GP knocked my insulin way too low hence highs but I started to tweak it myself, I’m now on the next level of it of mounjaro and I’ve got my insulin level ok etween 5-7. I still have the odd nausea feelings & definitely eating less. Slow weight loss but I can’t exercise due to osteoarthritis & waiting for a replacement knee. The only other side effect I have with it is diarrhoea (hope I’ve spelt in right which only happens for a day or so when you takes the mounjaro. Hope can cope with it️

Thank you for your reply, Lows are my only main concern, I’ve decided to drop down to 5 units of tresiba to let that kick in as I start mounjaro on Sunday.
I do walk at around 2 hours a day so don’t want to any hypo’s on the walks.
Not going to lie diarrhoea would be a blessing for me

 

[Dudette1]

My endo has reduced my tresiba by 10% so will start it 3 days time when the 5 is out of my system

 

[SHORAN]

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

That's a fair assumption !

 

[SHORAN]

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!

Frustrating no doubt.

 

[SHORAN]

Tell me about this Mounjaro ? what are its benefits ? why would it be given ( rarely ) to a T1 ?

 

[lovinglife]

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[Kaydee59]

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!

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

 

[Scrumbling]

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!

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

 

[twinattack10]

I am a type 2 in UK on Novorapid and Lantus and up until last year had been given Byetta to combat the weight gain from insulin use. I was on SW for 5 years and lost around 4 stone then plateaud for ages until Byetta was prescribed which allowed me to lose the last stone and maintain the loss for around 2 years. then the Byetta was stopped due to unavailability. having to increase my novorapid dose meant gaining nearly 1 stone back in around 7 months until May this year when my Diabetic nurse said I could go onto Mounjaro. in 3 months I have lost the weight gain, my blood glucose results are better, I eat less and feel fuller for longer. for me the downside is less regular toilet visits (if you know what I mean) and a bit more difficulty doing so. I have only experienced diarrhoea when away working and had a few more beers/ different foods than usual which could be the sugars etc. I am happy with the Mounjaro all in all.

 

[pfirstbrook]

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

Yes, I have T1 and have used Mounjaro for several months, slowly increasing the dose. It worked well for me and I lost 10% of my body weight in about 4 months. However, I felt nauseous taking it.

You will need to monitor your BG levels very carefully as you noticeably absorb your carbs more slowly. I had to reduce my Toujeo basal insulin by about 8%, and I used less bolus as I was definitely eating less. I wouldn’t like to be on Mounjaro without my Freestyle Libre monitor, which is a blessing. Good luck with it.

 

[Princess29]

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

No mounjaro is not used to treat typ 1 diabetes, it is approved for adults with type 2 diabetes.
If you have type 2 diabetes and a body mass of around 40kg or any medical condition that are related to obesity.

Mounjaro is not approved for treating type 1 diabetes.

 

[dd1111]

No mounjaro is not used to treat typ 1 diabetes, it is approved for adults with type 2 diabetes.
If you have type 2 diabetes and a body mass of around 40kg or any medical condition that are related to obesity.

Mounjaro is not approved for treating type 1 diabetes.

Im type 1 and i'm taking it. Doing it in small increments and am under a endocrinologist and diabetes team.

Had 1 bad hypo but been fine on it

 

[Hopeful34]

Hello and welcome to the forum @dd1111 Good to hear about people that ok on it. Has it helped your blood glucose levels?

 

[Carptastic]

im type 1 was told i wasn't allowed either because i was taken in with DKA and one of the main side effects is DKA

 

[stephaniemcd13]

Hi, I am about to start Mounjaro. I use a pump, does anyone else use them both together? I see that hypos can be troublesome but my pump can detect and stop a hypo by cutting delivery of my insulin. Hopefully this will help.

 

[stephaniemcd13]

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

Hi, I wondered if you could tell me what dose of Mounjaro you take? Also what do you go to treat your diabetes? Pump or pens. Thanks