Anyone else terrified about serious side effects?

[Y0gamummy]

Started WLI (mounjaro) 1.5 weeks ago. Suppression has been strong, lost 4lbs first week, which I'm delighted with. Some gastro side effects but nothing horrendous. However, it's my head that I'm struggling with. Have decided more than once that I'm going to stop because I'm worried about developing serious side effects. I read last night that the risk of pancreatitis is 1 in 100. I thought it was much rarer than that. Lay in bed last night imagining how I would feel if I developed pancreatitis and had to tell my DC it was because I was on WLI. Am I overthinking this?!? Or is this constant negotiation with yourself in your head about whether the jabs are the way to go actually quite common? For context, I started WLI after putting on nearly 3 stone over past 15 years and my weight tipping over into the obese category for the first time. No health conditions other than acid reflux and anemia.

I wasn’t terrified, no. I was aware of the risk of potential side effects but for me it was a risk well worth taking. And beyond a bit of constipation from time to time and some hair loss from quite rapid weight loss I’ve been absolutely fine. Getting on for 2 years taking it now, best decision I ever made.

I've also been on Mounjaro for just over 2 years now. I was not worried at all about side effects, as the effects of obesity were actually happening to me and the very small chance of serious issues from Mounjaro were not going to put me off using it.

Obesity raises your risk of pancreatitis significantly compared to being at a healthy weight, so you are not in a neutral position in terms of getting pancreatitis. Even being overweight increases your risk of getting pancreatitis, being obese increases that risk further and increases the risk of being seriously unwell with it. That risk increases the more obese you are. The quoted rate of pancreatitis with Mounjaro, from the patient leaflet that comes with the pen, is stated as "up to 1 in 100" and described as "uncommon". It doesn't mean that there will definitely be 1 in every 100 people that get pancreatitis.

There are several million people in the UK on WLI, and many millions more world wide. In the UK there are not tens of thousands of those people being hospitalised with acute pancreatitis, which is what 1 in 100 would mean. So in reality, in real world scenarios, the actual rate of pancreatitis is much lower than the 1 in 100 number quoted.

I’ve been on it now for almost two years and I’m no longer prediabetic, no longer have stage one high blood pressure, my cholesterol is normal, and most of all my Vulval lichen Sclerosis has completely disappeared to the extent my gynaecologist said if she didn’t know I’d had it she wouldn’t have known. Oh and I’m also 30kgs lighter.

Do I worry about side effects ? Absolutely not.

The incidence is 0.2 per 100 patient years, not 1 in 100.

@SilenceInside yeah, I did wonder about that as you're right, that would mean tens of thousands of cases and we'd have heard about that surely?! The main reason I started WLI was because I was worried that with my weight tipping over into obese, and continuing to head in the wrong direction, I was probably going to develop issues related to that at some point. Was already aware that while not pre diabetic yet, my blood sugar was all over the place and that was affecting my moods. And my worsening acid reflux (not helped by diet or being overweight) had caused some scarring in my esophagus. It's early days, I maybe just need more time to get myself used to having taken this step.

Most of the serious side effects are related to rapid weight loss or pre existing conditions.

I went with wegovy because it's less effective than MJ, did half doses for the first 2 weeks and have only moved up doses when weight loss stalls for several weeks rather than every month. I suspect I would have been fine but no downside to being cautious.

The way we have all been socialised in respect of weight and as women means the fear mongering about these drugs is ridiculous.There rae risks and potential side effects with almost all medication, including paracetamol. But none of this crazy. It's because it's for weight loss, ad used mainly by women that we have all this.

I guarantee when men finally start using it more (and they will), sudden,y this will all die back.

The only side effect I have genuinely worried about is losing interest in food, and, more importantly, feeding my family. I'm sticking at a lower dose than I would like as I've already found my motivation to cook and think about meals decreasing and ensuring my family eat a healthy, diverse diet is really important to me. I don't want to slip into default to easy food for them because I can't be assed to cook.

I was referencing what the patient information leaflet states about acute pancreatitis:

There's other credible sources using the up to 1 in 100 stat too, including an article in the British Medical Journal and British Heart Foundation, which says - "Most notably, they were nearly 2.5 times more likely to develop drug-induced acute pancreatitis, which is a serious condition where an organ called the pancreas becomes inflamed." However, the BHF article does also point out that the people taking part in the study all had T2 diabetes, which feels like an important point.

@SunnySunnyDayz when you say you went with wegovy because it's less effective, do you mean you didn't want weight loss to be too rapid?

I've been on Wegovy for four months and recently increased my dose to 1.7 mg. Sadly my appetite hasn't diminished and the weight loss is negligible. I will increase my dose next month and see if there's any improvement.

Honestly, if I had your level of anxiety over it, I’d consider stopping taking it.

I had no side effects whatsoever. No-one I know on mounjaro (and there’s a lot of them), have had side effects.

For my first pen, I went to see an actual, face to face, private doctor because I was worried about side effects. He has hundreds of patients. Not one single case of pancreatitis.

He massively reassured me and asked why I was so worried. Told me to get in touch immediately if I had any issues (which I never did!).

I know it's confusing but that risk level isn't an incidence level. It doesn't mean 1 in 100 people get pancreatitis.

If you think about it, if two million people are on it in the UK right now, that would mean twenty thousand people were getting pancreatitis every year just from GLP-1s, which would mean the incidence would have doubled. But it hasn't doubled. The incidence has risen by 2.6%

https://pubmed.ncbi.nlm.nih.gov/40024852/

@Molm perhaps you could feed back to Eli LIlly that their patient information leaflet shouldn't be saying "may affect up to 1 in 100 people"? That is not confusing, and I am not confused.

As you'll see from what I posted earlier I already said:

"It doesn't mean that there will definitely be 1 in every 100 people that get pancreatitis.

There are several million people in the UK on WLI, and many millions more world wide. In the UK there are not tens of thousands of those people being hospitalised with acute pancreatitis, which is what 1 in 100 would mean. So in reality, in real world scenarios, the actual rate of pancreatitis is much lower than the 1 in 100 number quoted."

I've been on 5ml for seven months and apart from thinning hair and some constipation I've been fine. I have developed quite a few wrinkles on my face, neck,arms and legs from my initial weight loss.

I feel that as obesity and obesity related issues are the biggest killer in the UK taking WLI are much, much safer in comparison.

Bit weird to have a go at me, @SilenceInside . I don't work for Eli Lilly. I wasn't tbh talking to you anyway, but @Y0gamummy , who was expressing her worries.

But carry on if you like, I guess. Get it off your chest!

Pancreatitis risk is increased with any rapid weight loss, not just WLI - fast 800, VLCD, keto etc, which is why some PP prefer slower weight loss with less effective drugs or lower doses, especially if you have good suppression (otherwise, you could take the full dose but eat more to lose more slowly)

Thanks @Molm

@Mariets I’m the same as you but the weight is coming off and I look pretty good! Never gave a moments thought about side effects.

I think you are reading outdated information, the risk of pancreatitis is no higher on the drugs, proven and they provide protection against pancreatic cancer. You’re safer on that off if you’re fat.

https://ascopubs.org/doi/10.1200/JCO.2026.44.2_suppl.712

https://journals.lww.com/ajg/fulltext/2024/10001/s5_glp_1_receptor_agonists_and_pancreatic_cancer.6.aspx

https://www.dailymail.com/health/article-15879295/pancreatic-cancer-remarkable-link-mounjaro-fat-jabs.html

There are over 7 million on the drugs in the uk and it’s now proven there is no increase.

I actually know someone who developed severe pancreatitis with WLD.

it’s not fun.

however as others have said the long term effect of being overweight, for me, far outweigh that risk. Not just physically, but mentally. I restrict my social life and activities because I don’t like my weight and appearance.

i am following a low fat diet, with little alcohol, along with the WLD. That should help reduce any chances. I’m veggie anyway so my fats mainly come from plant sources.

for me, the benefits of weight loss exceed the risks of side effects. I’m on the tablets- three weeks in, 6lb down, and no noticeable side effects so far.

Op do you suffer health anxiety?

I think there is a lot of outdated information out there, a lot of speculation and well, nonsense, the safety record of the drugs speak for themselves, there is about 60 million in the world on them now, likely more, and not one fatality globally due to correct use of a legitimate product.

compare that to nurofen who have 2000 people a year die from on average.

its just a synthetic hormone we produce naturally, not only is the safety record very high indeed there is now proven huge other health benefits, from cardio vascular health, liver regeneration etc etc, significantly beyond what weight loss itself would bring, as well as reduction in many cancers.

onky you can do a health assessment for you, but I’d ask do you sit and think about the health risks of obesity , heart disease, stroke, diabetes, fatty liver and think about telling your kids that?

I see a lot of these posts and it always bemuses me, as I ensure I’m educated on the meds and balance it with the very real and life limiting or ending risks associated with obesity. For me it’s a no brainer.