Mounjaro & angioedema

[purdypuma]

Hi

Seriously considering starting mountjaro in the next year as perimenopause currently has me 3 stone overweight. I can commit to a diet for a short time but then food noise takes over & i have an insatiable appetite so I need to quiten the food noise!

I have read up about it quite a bit & am ready to give it a go but angioedema is listed as a side effect.

I have already have a diagnosis of this due to a period of episodes over 2 years, mainly involving my lips swelling horrendously. My sister also had the same happen at the same age a few years after.

My airways never were closed or restricted & my last episode was 5 years ago. I saw a specialist at hospital but no root cause was ever established.

I can take anti histamines as a precautionary measure if I wish but tend to do this more in the summer as I have hay-fever.

Has anybody taken mounjaro or being refused because of pre-existing angioedema? I think i may need to book a gp appointment to discuss as I can find no useful guidance, only vague information so far.

Anybody ??

This is a prescription only medication. You will need to have a consultation with a prescribing medical professional before starting this drug, whom will be able to assess your suitability for it. If they feel you are suitable they will prescribe it?

@tobeornottobe1 I've been approved by an online prescriber but there's nothing asked about angioedema or similar. I've bitten the bullet & my GP is ringing me this weds to discuss. I'm hoping they will give me the go ahead & to proceed with caution as I've not had an episode for over 5 years. 🤞

@purdypuma very interested in this as I get angioedema as an aside to atypical presentation of eczema. I'm hoping that the jabs can actually calm the inflammation down as it's an immune system thing. Please report back!

Is there anything to suggest that mounjaro works with or affects the immune system? I'm really hoping that my gp gives me the go ahead as I'm reading lots of success stories...will definitely update when I've discussed with my gp.

Angioedema is an inflammatory disease (hence the effectiveness of anti-histamines). MJ appears to be very good at reducing inflammation and improving conditions associated with over-active immune system. There are trials on this ongoing at the moment so far the evidence is anecdotal, but I have seen many, many people reporting massive improvement in a wide range of inflammatory conditions (PCOS, arthritis, lymphedema, eczema etc) and never seen anyone report a worsening. Within 12 hours of taking MJ, long before I lost any fat, my fingers had changed from puffy and swollen to thin and normal and I lost about 7lbs of water overnight. I think MJ is most likely to help you and of course you can stop if you don't like it.

You shouldn't be refused of angiodema. It may count as a co-morbidity. Just fill in the form correctly with your pre-existing conditions and medications.

If one company refuses, you will certainly find one that is more open and understanding.There are several lists online a) comparing prices b) comparing how easy it is to get a prescription c) comparing things like which companies won't inform your gp or are not fussy about photographs or pre-existing conditions d) which companies will continue to supply when you are normal BMI.

It is also easy to start with one company and switch to another. Some are much more difficult and expensive so definitely worth shopping around. Check out the MJ threads here and also mounjarouk on reddit for lots of information.

Angioadema is listed as a rare side effect of mounjaro. I think I'm just wary of starting the injections & my Angioadema reoccurring as at the moment it's pretty much dormant (if that makes sense) & I've not had an episode for over 5 years.

The way side effect listing works is everyone who has any symptoms, illness, flare up after taking a medicine (from aspirin to Wegovy) can report it or their doctor can report it and then it is listed as a possible side effect. This means that many things that are just coincidences get listed as possible side effects. In your position, I really would not worry. Of course it is very good to speak to your GP as you are planning and to research on the internet. Just to warn you though, many people find their GP is not very knowledgable about MJ and to some extent we are all learning as we go on. Good luck! I am sure you will be fine. Many people find it is really good who get food noise and insatiable appetite so you should be a good responder.

@dcbgr god I really hope it does. I've had next to no help from dermatology and still trying to extract a new referral letter from my GP that I was promised months ago. If this can improve my quality of life on the inflammation side I'm not even so bothered about how quick/how much it affects the weight.

UPDATE *
Not the news I was hoping for. Had a conversation with my GP who has refused to provide any advice or guidance as she wouldn't be prescribing.

Emailed Medexpress at the start of this week to explain my circumstances & to query if they could prescribe.

They escalated it to their medical team who have been in touch today to advise that they can't prescribe as they feel I would need weekly face to face support/monitoring with me having angioedema & they can't provide this.

So at this moment In time I'm back to square one. Very frustrating.

Just came across this thread. I had a severe angieodemea reaction this week after taking my 2nd starter dose of Mounjaro. Never had an allergic reaction like this before. Took the injection on Sunday afternoon, woke up Wednesday morning with hives/urticaria rash down my arms so took antihistamine. Woke up at 3am on Thursday morning with the left side of my face swollen up and hives worse on arms. I looked like I’d been beaten up. I’m now on a 5 day course of steroids, different antihistamines and a course of flucloxacillin to cover all bases. The swelling has started to go down on my face but it looks like I might be starting to bruise, it’s still quite tender.

I have taken wegovy previously (only 4 doses) and never had a reaction like this, had a 4 month break then decided to try Mounjaro.

Sorry to hear this! This is why I'm afraid of trying mounjaro, even though I want to. Part of me thinks give it a whirl & see, my over so helpful mum tells me to go to the gym more often & to make sure life insurance is up to date if I do decide to try it!😂
Seriously though....I might be asking the obvious but has it put you off using mounjaro again?

But your GP has advised against it, obviously thinks you are high risk. Is it worth going against advice? There are other injections and weight loss methods to try.

My GP hasn't advised against it, they refused to give any guidance as they wouldn't be prescribing. Medexpress refused to prescribe as they stated I needed weekly monitoring, in their opinion. I've not had an angioedema episode in over 6 years, hence why I'm tempted to take the risk & see how I go on.

I stopped mounjaro following my reaction and have now taken 2 doses of Wegovy. I had taken wegovy for a couple of months last year without any issues, so decided to go for Wevovy again.

I've looked at Wegovy as an alternative option but i think that one too lists angioedema as a side effect as well. They need to hurry up & make it in an alternative administering method!

Hello,

I have made an account just to contact you regarding this because I am in the same boat!! I just wanted to know how you have got on?

I did mounjaro for 3 months last year and didn’t have a problem. I stopped over Christmas and restarted this year, 2 weeks in I started experiencing angioedema symptoms for the first time so came off for a few months but I have still being experiencing them symptoms and it’s well out of my system. I have reordered mounjaro as I’m desperate to lose weight and can’t do it without. I’m really panicking now it’s come round to being delivered. Doctors won’t give me advice because like you say they haven’t prescribed themselves so won’t comment on it which is frustrating. I really am stuck. I don’t know what to do! Xx

@Rlbx Hi, I've not taken the mountjaro to date. I live by myself & am scared of having an angioedema episode if there's nobody to help.

At the moment I'm currently trying to eat as healthily as I can, cut out as much junk as possible & drinking loads of water as going on holiday in June. I'm also taking berberine supplements as its supposed to have similar benefits to mountjaro but been taking these less than a week. Ive lost a stone & a half in 5 weeks to date which I'm happy with! I'm also going to download a hypnosis weight loss book on audible.
Throwing everything at it & hoping for the best!
Best of luck with your journey 😃

Chronic angioedema, urticaria and anaphylaxis. Xolair treatment was not working. I started Mounjaro and have not had an outbreak of angioedema, urticaria or anaphylaxis in 9 months. Angioedema was a daily occurrence for over 2 years leading to Anaphylaxis. Mounjaro has lowered my inflammation. Inflammation markers are low and am feeling as healthy as ever. I no longer need the Xolair treatment. 🤗