Mounjaro/Wegovy with >5 stone/30kg to lose - thread 10!

[MooBaggage]

New thread for anyone with more than 5 stone/30kg to lose. All welcome, whichever part of the journey you are on.

We have newbies and those who have got to their targets and lots of us in between at various stages, all supporting each other along the way.

Kiwis and milled flaxseed are still the order of the day, along with water, posh scales, weight loss charts (thank you Infosec!), Vinted and even more water...

We're coping with the Mounjaro palavers and hoping that somehow, we will all still be able to carry on with this amazing journey which is working so well for most of us.

No discount codes please - there is a separate thread for that.

@MabelSpan congratulations on escaping the Obese category and only being overweight! 😍

I am following where you lead, my SW twin - and you are also my age twin! 😃

My official weigh day this week is Thursday, so I'll check in then - am hoping to have kept the 3lb off I miraculously lost last week, as that will do nicely..!

Yeah, I know! I heard there was a lawsuit but I'm actually not sure if it goes beyond anything written there - the rest of the articles I found were also from law firms so I can't give any more support to that than what is here. I suspect that element will become clearer in time.

I'm also sure that if there was an appreciable risk, we would have had some reports from MN boards - there must be hundreds of MJ users on here. So I'm trying to reassure myself that my fears are overblown. However, it is a phobia of mine and I'm not sure I can talk myself into accepting the risk, however small!

I would likely try harder to accept it if the prices hadn't just tripled! I think this is maybe just the little nudge I needed to say it's time to stop.

Have only skimmed through this but this part seems the most important:

“
Connections between Mounjaro and vision problems:

• Fluctuating Blood Sugar Levels: Mounjaro helps to regulate blood sugar levels. Significant fluctuations, if not well-controlled, can lead to diabetic retinopathy. High blood sugar levels damage blood vessels in the retina, potentially causing vision problems and blindness if untreated.
• Diabetic Retinopathy: Patients with diabetes are at increased risk for diabetic retinopathy. While Mounjaro itself is not yet directly linked, its role in managing diabetes can impact the risk.
• Hypoglycemia (Low Blood Sugar): Mounjaro may cause a patient’s blood sugar to drop; if blood sugar drops too low, it can lead to blurred vision. Symptoms usually resolve once blood sugar levels normalize.
• Side Effects of Other Medications: Patients with type 2 diabetes often take multiple medications to manage the condition. Some medications, in combination with Mounjaro, might contribute to vision problems, making it essential to monitor all medications and their interactions.
• Allergic Reactions or Adverse Effects: Although rare, some patients might experience allergic reactions or adverse effects from Mounjaro. These reactions could potentially impact vision. Any unusual symptoms should be reported to a healthcare provider immediately.

Regular eye exams and blood sugar monitoring can help manage and prevent vision-related issues. It is imperative for Mounjaro patients experiencing vision problems to consult with a healthcare provider if they experience vision problems.”

I am prescribed for diabetes and Mounjaro does an amazing job of managing my sugar levels alongside a low carb diet, so I’m comfortable with this risk, I know my sugar levels are not wildly fluctuating, they are much much better than before I was on Mounjaro when I was taking insulin and metformin.

I am at increased risk risk of diabetic retinopathy and am screened yearly for it, next screen is actually due next month so will see if there has been any progression from last year. That will give me a side by side evaluation of pre and post MJ results.

Hypoglcycemia isn’t something I suffer from and I check my sugar levels so would know if I did, but I also ensure that I have a varied diet and enough calories to maintain healthy sugar levels.

not on any other diabetes medications and the other medications I am on are not contra-indicated with mounjaro

Allergic reaction is always a risk but I’m nearly a year in so far without one and it would be unusual to develop so late so I’m willing to take this risk.

Makes sense, yes. The part that scares me is the eye stroke/NAION sudden permanent blindness. They don't actually know why that should happen twice as often in MJ users and non-MJ users; because it's so rare it's hard to track the mechanism by which it could happen.

Thanks everyone for all the kind words.

my Asda order was approved late last night! Unfortunately my order is due to be dispatched today and I am out tomorrow 😭😭😭 i’m hoping either there is a slight wait for dispatch - which has happened once before, or that my driver will leave it in a safe space. He’s very friendly and local so i am hoping he might.

anyone know how it works with DPD and failed delivery? I don’t mind redelivery the next day as it won’t be hot this week, just don’t want to risk the loss of my parcel!

Asda still haven’t put up new prices - makes me wonder if they have still got negotiations and it might be a little better for them? Given they are a Zava pharmacy?

A lot of it will be disparity in demographic.

if you look at the reasons they believe Mounjaro is connected to vision loss it’s predominantly diabetes/sugar related.

in the general population only a very small proportion of people are diabetic/have sugar problems so the proportion of those experiencing NAION is tiny.

in the population of people taking Mounjaro the proportion of people who are diabetic/have sugar problems is much higher, so the proportion of those experiencing NAION will be larger.

It like if you walk into a Victoria Secrets modelling shoot and poll the people present for clothing size, 90% will be in super small clothing.

If you poll a weight watchers group 5% will be in super small clothing.

if you poll the general population 50% will be in super small clothing.

same question set, different demographics so wildly different results.

I get what you're saying, but it still doesn't explain why a diabetic patient is twice as likely to suffer NAION on a GLP drug than not. Although it's also true that the study did not look closely at whether the GLP group was actually taking the medication they had been prescribed. So although Eli Lilly are taking it seriously, it can only be seen as a very rare and unusual side effect.

I do think it's an important one for people to be aware of, but it is definitely not a statistically big risk!

It’s inevitable that more side effects will be identified - a bit like the Covid jab, when you suddenly have a huge number of people taking something they weren’t before, the numbers mean that rare side effects show up quicker than in a drug with fewer users.

But it is absolutely important that we all make our own, medically informed, decisions about risk. So it is useful to hear about newly reported potential side effects.

@Darlinghag DPD happily leave in my porch, I think you can log on to their website and set a safe place option.

Yes agreed that the more people use a drug, the more reports there will be re: any side effects (good and bad - I am sure MJ will be used for different kinds of addiction at some point in some form in the future, given the number of people who are reporting amazing positive side effects re: giving up drinking/smoking - myself included!). For me, the positives still outweigh the negatives hugely - but that's my choice to make.

I'm really hoping that this time next year I am in a position to ask for another monitored sleep trial, to see if I can give up using a CPAP machine, as I hate using it (although recognise it's important, so I use it every night) - I would love to be free of it! To get rid of obstructive sleep apnea would be amazing.

It's so frustrating that the price hike is putting an additional pressure on people to make difficult choices re: balancing the cost with everything else that is also hiking up in price (although not our salaries, obvs.... 🙄)

@Darlinghag can you go online and re-route it to a collection point, like your nearest post office? I did that with a IQ doctor MJ delivery recently and it worked well? Hope you manage to get it/re-route it safely!

Getting rid of my CPAP machine is probably number 1 on my list of motivations! I use it religiously and after a rocky first six months find it fine, but I absolutely hate it.

@taylorswift1989 I seem to remember that the NAION information came from an eye hospital in the US so, just as @InfoSecInTheCity said with different populations, remember there are diabetic and diabetics. Some will be relatively mild while others will be far more severe or advanced and they are the ones likely to be under hospitals for diabetes and eye complications.
Just because a risk looks to be increased, it may not be increased evenly across the population too

Thank you, that's a good point. I realise that it's not a significant risk statistically speaking. I may be being quite irrational due to how scared I am of this particular outcome!

@taylorswift1989 I think this kind of thing illustrates the problem created by an increase in risk being described in relative rather than absolute terms when the starting risk is absolutely tiny. A similar thing, starting from the usual bad science reporting the press always indulge in, caused the pill scare of the mid 90s.

When our brains hear or read phrases like "risk doubled" and "twice the risk" it creates an emotional response that bears no relation to the actual increase in risk being described, because double is associated with BIG (double portions, double trouble, double your money) and our brains can't easily picture that doubling tiny produces....tiny. Especially if it plays into existing fears. Obviously, though, it's a very personal decision and don't continue if it's going to stress you more than it's worth. And the increased cost is a very very real issue, clearly.

@darlinghag My DPD driver left my order in my safe place on Saturday, because of course the one-hour delivery window was at the exact time that I needed to pop out of the house. The option for a safe place came up on my app, I left a note for the driver on my door, and he actually called to confirm the delivery time so I asked him to leave it in my safe place as per the app. He did tell me to make sure I wasn't too long because it was medication and needed to be refrigerated. But ASDA pack so well, the ice packs were still frozen when I got home a few hours later.

So you should be fine. 😀

I know, and I know I am probably worrying over nothing, but then I made the mistake of reading some threads on reddit where a couple of people talked about losing part of their vision when on MJ and it scared me! And yes, the price is really beyond me now. I think i will finish my two pens and try to get in a "maintenance" mindset (even though I still have weight to lose.) I know the hunger will come back but to be fair, I've felt a lot of hunger and food cravings lately anyway. Probably due to tiredness/menopause, but it makes me feel that okay MJ isn't making a huge difference, it costs a lot more than I can afford, and now there's this new information that has freaked me out... Alternatively I could hold on to the pens and go back to MJ in the future if I feel I need to and can afford it, and maybe if there's more info about these vision issues.

If the price hadn't gone mad and I hadn't come across this information, I would happily be on MJ forever! So it's all a bit of a mess for me right now. I'm hoping I can see it as, I've had a big boost to my weight loss, and I can keep going with high protein/low carb/strength building. Losing weight was never as much of a problem as keeping it off so I think if I can keep losing without MJ I can then reassess when I'm a bit further along. I think in the next year or so we're going to see even better weight loss drugs come along and it seems like the risks and side effects decrease with every new generation of drug, plus I'm hopeful there will be a tablet version soon too, which will bring the cost down.

It's difficult and I hope you can find a way forward that you feel happy with. It does sound as if you've got a really good chance of maintaining the MJ lifestyle changes without it, if you're already coping with hunger and food craving.

If you have an extra pen or two how do you plan to handle it w.r.t. your current prescriber?

My pharmacy was totally out of stock (& I had only one dose left to take) so I took a chance & ordered from previous pharmacy but I really didn't expect it to actually turn up so once my pharmacy had stock I got my normal pen from them.

TL:DR I have two pens "extra" - do I tell my prescriber & ask for an ordering gap or not tell but order every 6 weeks to use up an extra dose per order? As usual I'm worried I'll be caught out/told off 🙄 (I promise I am a competent nearly 50 yr old in other ways 🙈😂) either way but think the order gap would be a simpler...

💐@taylorswift1989it's funny how relatively small things can affect our perception of risk

it sounds like you have a good plan in place & as you say you can change your mind later if you want to

I weighed myself just before bed last night. Got up this morning, had a huge wee and weighed myself again as an experiment. The scales went up 1.8lbs. Overnight.

How?!?!

WTF!

@NotsosunnyShropshire that is crazy!! No advice sorry but sending solidarity!! I’m sure it will disappear just as fast!!!

i’m after some thoughts please…

im 3 stone down and 4 - 5 st (dependant on how I feel!) left to go

started in May 25

currently second month on 7.5mg, suppression fairly steady on this but food noise/cravings etc creeping back in

pre the price hike I wouldn’t have hesitated to step up probably to 8.5 for the rest of this pen then 10mg.

i was lucky to be able to buy a bundle (1x10mg & 1x12.5mg) on the 15th.

at that point thinking that would give me 5months if I stayed on 7.5mg but now I just don’t know what to do

one of the huge psychological benefits of MJ for me is the letting go of the vast majority of stress and anxiety around food and the choices I make.

i feel like I’m learning to trust my instincts again (even tho I know they’re driven by MJ!) my hope was that I’d reset over the weight loss time & be able to then sustain either alone or with low dose maintenance

so option 1 maintain this calmer mental state & increase maybe 8.5 will work for months

q 1 - have people who’ve had to move up steadily due to loosing efficacy all hit a level that hasn’t worn off??

option 2 stick at 7.5mg so can stay on it for longer and just suck up the increasing food noise & anxiety

i may be able to afford 1 more pen at a stretch but realistically won’t be able to continue 😖

Q2 - has anyone any experience of Wegovy & how that compares to MJ in real life? Have done some reading & wonder if worth trying as by then I’m hoping will only have 2-3 stone left to loose

apologies for the length of post!!!!

@Seahorsesplendour
In answer to Q1 - yes, I moved up steadily, actually got as far as 15mg but realised quickly that it was too high, I didn’t feel well at all. I went back to 10mg and stayed there for 5 months. It was definitely the maximum dose that suited me and it continued to be effective. Now I’m at goal and on the way down again while maintaining, currently on 7.5mg.

Are you still losing on 7.5mg? Maybe this is a good time to start trying to manage the anxiety, if you won’t be staying on MJ indefinitely. That said, if I were you I’d probably go just a little higher to take the edge off. You could get 6x 8mg out of the 10mg pen and 6x 10mg out of the 12.5mg. (Or more doses of 8mg if that is working well.) Then I’d see what’s what - maybe one more 12.5mg and use it to gradually reduce the dose and get used to the food noise while still getting some help from MJ. And then maybe continue on your own.

I’m sorry - this is so shit for people in the midst of their weight loss. But - Wegovy is a very effective drug, thousands and thousands of people have lost a lot of weight with it, so you might also think about switching as soon as you finish these two pens, maybe there’s no point in hanging around and paying over the odds for MJ when you could do just as well on Wegovy. Thinking about it - this is probably what I’d do. Finish off the MJ pens you have at whatever dose works best and then switch.

@NotsosunnyShropshire this has happened to me too today - am weighing 2lbs more than I did yesterday 🙄I feel a bit hot and puffy, weirdly, so I know it's just water retention - so obvs we need to drink tons of water today to flush it out!

Stupid bodies....🙄😀

@Seahorsesplendour I have crept up doseages through from 5mg to 7.5mg, stopping off at 5.75mg/6mg/6.5mg etc as I went along.

I got to 7.5mg and felt really good - good suppression but no nausea, so have been on 7.5mg for 4 months and will stay here for as long as possible - especially given the price increases...

Switching to Wegovy - I have no experience of this, sorry - but it does sound like a good plan towards the end of the journey, to help with maintenance and something I'll consider too.

Re: switching to Wegovy - after a very frustrating afternoon trying and failing to sign up with Juniper yesterday I gave up and ordered a 1mg Wegovy pen from Medicine Marketplace, who are my usual supplier. 1mg seems to be the maximum they will dispense to switchers. I'm hoping they will be able to process the request fairly quickly as they haven't got any MJ stock to keep them busy!