Mounjaro and IBD

[GillianHanderson]

I've gone onto the websites of a few Mounjaro providers and when they ask about IBD and I tick, yes I have an IBD, they say they can't supply me with the product.

Does anyone know if this is the case for all of the providers? Or have experience of Mounjaro and IBD? My GP thought it should be okay.

Bumping for morning traffic! 😊

This may be due to automated algorithms. I can see why they would be cautious as IBD affects different people differently, and there can be an increased risk of acute pancreatitis. It might depend on how stable your IBD is at the moment and what other medication you're on. As a first step, you could try emailing them or phoning them to ask about it.

I've heard that companies with slightly higher prices are more open to considering those with medical conditions on an individual case-by-case basis, but that might just be anecdotal. Some online pharmacies allow you to book a phone consultation with the pharmacist, for a fee (I know Oushk does, possibly Voy also?).

https://www.blogs.joinmochi.com/blogs/glp-1-medications-and-inflammatory-bowel-disease

I realise this is from the US, but it has references which might help to equip you in your search.

There are people in the CCUK FB group who have active IBD and are on Mounjaro. Not all have declared it to the prescriber but they have spoken to their IBD teams who have given them the okay to use it.

I have a history of IBD (panproctocolectomy so not an issue now) and haven't had any issues with using it. I think the GI symptoms that people get tend to be more colonic orientated and obviously I get to skip that as I don't have one!

Thanks @ThreeBootsOneGlove and @Southwest12 that's all incredibly helpful!

I've been on minimal meds and maintaining remission with UC for years. I found a couple of providers that didn't specifically ask about IBD. To be fair, they did ask if there was anything additional I should disclose, but I chose not to.

I've been on MJ since July and am now down from BMI 38 to 28.6. No real side effects apart from some tiredness and an itchy reaction at injection site.

Thanks @Swissrollover very good to know. It sounds like it's going very well for you!

@Swissrollover just to check - when you say 'minimal meds' is that an autocorrect from Mounjaro, or do you mean a low dose?

I came off immune suppressants and thankfully stayed in remission. Then, I stopped mesalazine pills (from 800mg 3x daily) and used a 1g suppository daily instead as they worked better for me.

I reduced the suppository to twice a week for a couple of years, and take even less now I'm on MJ.

Thanks so much for explaining @Swissrollover

@GillianHanderson
I know this thread is old now so I'm not sure if you'll see this...
But I want to tell you that I lived with diarrhoea 5, 6 times daily for 15 years with almost constant tummy ache. The diarrhoea was increasing in frequency and it was stopping me from being able to get to places on time such as the school run, work, appointments, as I'd be stuck on the toilet. And it was stopping me from being able to go on long journeys or to places with no toilets.
I started MJ a few months ago and it has completely stopped. I no longer have diarrhoea and I go to toilet once a day. And when I go, it's normal, not diarrhoea.
This has literally changed my quality of life and my health.
It's actually a miracle.
I can't find anything online to show that MJ helps bowel inflammation. Whenever I search online about it all I find is the opposite - that it can cause bowel problems.
But I just wanted to share with you that in my case it has put my debilitating bowl inflammation in to remission, so I wish these online pharmacies wouldn't automatically say no to people with IBD.

That's incredible! How did you get your prescription?

Well I am overweight so I am buying it privately online for weight loss. But it just so happens that I have had this life changing effect on my bowel inflammation as an unexpected side effect! I only started using it for weight loss. I never knew it would cure my horrendous daily multiple attacks of debilitating diarrhoea and tummy pain.
I feel like there's so much more to learn about this drug for other health conditions, in relation to its anti inflammatory effects.

Hi @TheArts Sorry I only just saw your post. This is so interesting coz I’m experiencing the exact same improvement myself now that I've started Mounjaro. It’s incredible!!! I guess it’s coz Mounjaro slows down the digestive system. But I really wasn’t expecting this. It’s making such a difference to my day to day life.
I don’t know whether my inflammation levels would actually show any improvement but tbh the daily life aspect is enough for me!

This is the same for me. I have Crohn's disease and the symptoms have been worsening over the last 3 months, even with Infliximab. I started taking Semaglutide 1 week ago and I feel normal again. Would be great if they prescribed it for IBD patients too.

My IBS has improved dramatically, my connective tissue disease (a bit like RA) and fibromyalgia have also ìmproved. I have my inflammatory markers checked ever 6-8 weeks and they have also improved.

My GP, Rheumatologist and Endocrinologist all believe semaglutide is the new wonder drug for much more than diabetes. I've been given it for weight loss but I'm not in the UK so there are not the same restrictions.

This is so interesting and encouraging!

I have UC. Diagnosed over 10 years ago.

I have started MJ 4 weeks ago in what I don't consider a flare for me.
Usual habits... still some urgency each day and an average of 4 BM per day
In a flare... 7 to 10 BM a day, lots of blood, mucus, urgeny etc.

Just before Xmas I could feel that I was on the verge of a flare after a few months remission. The urgency and also bleeding was starting to increase.

Since MJ I have averaged once per day with zero bleeding/mucous or urgency.
Had one day of 4 BM but interestingly this was 2 days after a curry.

It would be amazing if the link between IBD and this drug was researched further.
As someone who feels like they have "tried it all" (mesalezine tablets, enemas & suppositories. Steroid courses, azathioprine, mercaptopurine) if this is proven as a link to remission it will be a game changer!

I'm 51 and I have had Ulcerative colitis since I was 25 years old, it has never been under control, I was even asked if I would like my bowel removed, I decided against it and was willing to live with the pain and hassle. I was taking Entyvio that does nothing by the way. I started taking Mounjaro for the past 3 months and I am cured, I can't believe it, I no longer feel tired or have to rush to the toilet 15 times a day. I've also lost some weight, this is the most healthy I've felt since I was in my early 20's. I didn't tell my chemist I had U/C.

Amazing, I'm so pleased for you! I'm a year on MJ now. I've gone from BMI 38 to 20.9! I was and still am in remission. I've also not disclosed my UC.

I note that you say your BMI was 38, and you have UC.
My GP tells me I can't have UC because I'm not losing weight and don't have a low BMI. He says it's impossible to have UC if I am overweight, which I am.

I'm so sorry your GP is dismissive. Have you had any testing or a diagnosis?

TBF, I wasnt overweight when I got ill, after my second baby, and was always very slim. I only became overweight after 3 children, a hysterectomy and medication for UC including years on steroids Overweight led to healthy again through an unsustainable strict diet, so the weight returned and would only increase no matter what I did.

MJ has saved me, I just hope it isn't denied to me in the future if my UC is found out. I have a stockpile to see me through a decent period of maintenance, just in case.

The same happened for me as I also have ulcerative colitis ( I was diagnosed 25 years ago) Ive managed it Fairly well with Medication) but when I applied for MJ I was rejected because I had UC? 🤷🏻‍♀️ I went to my doctors and he said I could still take it so I’m now not sure how I can apply for it without lying about my medical history? 🤷🏻‍♀️

@Kezzaking I know this will be frowned on by some but just lie.
I haven't declared my colitis to any of the 4 providers I have used.
I came off mj end of may and as soon as I hit 4 weeks I started a flare.
I went back on it very end of July and guess what... full remission again. I am literally on these jabs to cure my colitis and maintain my weight loss, dont want to lose anymore.
Again, I had to bend the truth to get re-prescribed but I would do it again in a heart beat for the quality of life remission is giving me.

Do your providers write to your GP? Most of my previous providers now seem to insist on it. I currently have a stockpile as I always ordered ahead through fear of being cut off. I am on maintenance but thinking about future orders as I imagine I'll want to stay on long term/ forever.

I can't wait for MJ to be considered ok, or even a treatment, for UC.

@Swissrollover I know the vertical pen is got, medexpress wrote to the GP and they sent a generic letter basically saying they didn't have the time to check records and respond to providers. (Obviously a lot more formally than that!) I haven't actually checked my nhs app since to see if any of the other providers wrote to them... I'll have a look and report back!