Lipoedema on Mounjaro

[TinyRebel]

Any lipoedema sufferers here? I’m about to start Mounjaro as my legs (and arms) are the worse they have ever been. Am wondering if perhaps the HRT is to blame, but it’s helping tremendously with the peri-menopause symptoms so reluctant to stop that.

Haven’t been in a swimming pool or the sea for years I’m that ashamed of my limbs, so am really hoping the inflammation improves. I’m at the point where am in constant low level pain and discomfort. I cry if anyone glimpses my cankles! Summer is just around the corner and am really worried about the accompanying lymphoedema in the heat.

Have got about 40 kilos to lose to be in a much happier place, 50 if I want to get back to the weight I was before 3 pregnancies and menopause made the lipoedema so much worse.

Would be really interested to hear others’ experiences.

I have lipoedema and take Mounjaro. I’ve lost 22kg over nearly a year and it’s not had any impact on the lipoedema I’m afraid. Similar weight loss required to yours.

Not much help, but decades glued to a desk in office jobs in my case, I had awful lipoedema in my legs, like tree trunks.
Happily I can say that swimming was coincidentally the one thing that actually got my legs back to normal.
I have to continue the swimming to maintain the result.

I eventually also added in short training swim-fins for further muscle toning - just 10 lengths with the fins as part of a longer swim, twice a week for the noticeable difference.
(Only 2 st loss over 8 months - ultra slow for me alas, still a size 22 - but proud to be in the pool and at a larger size - if it helps?)

Nope, absolutely no way I’d get anywhere near a pool. Am too ashamed and it’s bad enough if anyone sees my cankles let alone the rest - I quite literally have a panic attack.🙄

Will see what can be achieved with the help of the Mounjaro. Have lost weight before but had to stave myself down to max 600 calories a day to do so, which is incredibly unhealthy and my hair fell out at an alarming rate. This time I need to ensure am eating plenty of protein and also take iron supplements.

Hi OP, I have lipoedema too and have since I started puberty. In both my calves and my thighs. I’ve self loathed my whole life and never understood why my bottom half was a full 2-3 sizes bigger than my top. It evened out after children to be just quite big everywhere (but will a waist!) and my BMI hit 39ish so started mounjaro after Christmas.

Ive lost nearly 3stone so far! Majority off my stomach and hips but actually I am seeing fat loss in my lower body too! It’s slower than the top but it’s definitely there. The pain and that tight feeling has totally gone too. The circumference of my knees have gone down too. Mounjaro has changed my life. I know that sounds OTT but I feel free of food noise and pain for the first time in a long time.

I will say too though that I’ve been doing a lot of work on my legs. Not just exercise but also following the advice around use of massage guns/massage gloves and dry brushing (follow Kaz Talks on Instagram for advice on how to do this) to break down congested tissue and allow the fat cells to reduce. I think this has really changed the texture of the fat in my legs and it’s very soft now as opposed to rock solid. Ive promised myself I’m going to venture into the sea this year on holiday (in board shorts over a swimming costume!!) and stop restricting my life.

good luck!

Thank you for taking the time to reply. Very encouraging and some great advice about the lipoedema management too. Can’t wait to start now!

Hello everyone,

I also have lipedema and I'm going to take my first injection this week!

How did you get on OP? @TinyRebel

@Hazzyyy Ive just re-read my op and am pleased to say I’m in a completely different place to where I was then.
Am virtually pain free and the inflammation has reduced considerably. My skin is so much better, without the redness and the beginnings of gravitational eczema. I’ve lost 20kg so far, so not as quickly as I have done in the past, but steadily.

I will say that the lippy fat accumulation is more noticeable as being abnormal now, with the fat pads around the knees, shins and ankle cuffs, but the fat is more ‘floppy’ and less tight feeling. I can feel where the small fibrotic lumps are, which is quite unnerving. However, when I finally go and get lipoedema liposuction done, it should be easier to work on.

All the best with your journey. It has been an absolute game changer for me and well worth the investment.

What a great update @TinyRebel and well done on your losses!

Hopefully in the future the drug will be licensed for the benefits and relief it can give to lipoedema suffers, but I fear that will not be until after/near patent expiry and/or cheaper generic versions start to become available which is a long way off yet.

Hope you are able to keep on it too after the recent price hikes.

@TinyRebel

I am so happy for you! What a wonderful thing to read. Also thank you so much for replying.

20kg is brilliant!

Yes I heard you can see the nodules more, but glad your skin texture is better.

How much mg are you on if you don't mind me asking xxx

I've experienced similar to the OP. 5 and a half stone down. Legs and hips still the same measurements. However, now very soft instead of rock hard and swollen, and the nodules easier to feel. That heavy pressure feeling is lifted.

Thank you @WeAllHaveWings and @Hazzyyy. Whilst you’d still never catch me in shorts or a cossie, am starting to feel like myself again.

On my second 10mg pen and have decided to stay at this dose for the moment. Seems to have struck a happy balance. Still not hungry at all and can go for ages without eating, but don’t feel sick when I do. Plus the 12.5mg is more expensive! Think I’ll shop around a bit for the next one though as although happy with the service from Med Express, but they do seem pricier.

I also have lipedema, quite severe. I've lost 6 stone now. Legs have improved. Still big but so much better!

I have it too in legs and arms. I'm not seeing any reduction in lipoedema fat but I have had a big reduction in pain and inflammation while on mounjaro which is amazing and makes me want to stay on it forever, that's not possible unfortunately, even more so now with the price increases. I've lost 47lbs so far and I'm hoping to lose another 30, my goal weight is to get to 199lbs, I don't think I can get much lower than that

Thank you @PearlsPearl @828Pax @slightlysmallerPoisonIvy @TinyRebel for sharing your stories. They have really given me hope

Before I had my little boy two years ago, I had lipedema in my legs and arms but had a slim waist and 'dealt' with it. Fit and active, size 14/16. In the last year my lipedema due to the pregnancy has accelerated so badly. My legs, arms, stomach, back, I swear even my chin!

I feel like I'm losing my mobility, just can't do as much and now I'm a size 18/20.

I feel like a completely different person and mentally its so hard

I'm really hoping losing some non lippy fat will give me back my confidence and mobility and have less pain and inflammation is going to be amazing!

I'm scared to take it but I've bought it and I'm taking 2.5mg on Thursday night.

Hoping I don't get bad side effects!!

Thanks again everyone. Nice to have a little lippy Mounjaro community! X

Times of big hormone changes are the worst for it, puberty then pregnancy and now in peri it started to increase again which was the kick for me to try to lose some weight. I wasn't expecting it to make the lipodema fat disappear but I hoped that losing some of the regular fat would at least slow it down and help a bit with the rapidly decreasing mobility.
I started mounjaro in May and it has honestly been life changing for me, within a week I had so much less pain and inflammation and within a month I had started exercising!

Good luck for Thursday @Hazzyyy, I hope you find it helpful too! Remember to hydrate and eat protein!

PS take before photos and measurements!!!

That's brilliant it worked so quickly. Hoping it does for me too

Thanks for the tips! X

@Hazzyyy I started mounjaro purely because my mobility was massively impacted, I was a size 24 and walking was agony.

I now, 5 and a half stone later, can walk for an hour non stop. MJ is the best thing to have happened to my legs! Same size but a million times better, less pain and heaviness.

@PearlsPearl that is amazing to hear and I'm so glad for you.

You are giving me hope!

Hope I don't get the nasty side effects!

5.5 stone, what an achievement. Well done xx

argh I stopped MJ last week and the heaviness and pain was back so quickly! Can't really afford to keep going with MJ but I'm going to have too. I forgot how debilitating the heaviness and pain is!

@828Pax I will do absolutely anything to never stop mj even if I have to sell my first born 😄the effect on my lipo is worth more to me even than the weight loss.

I came off it for a month for medical reasons (had to have a 30 day break) and at first it was ok but but the end of the month my legs were heavy and swollen again. I couldn't wait to restart! Thankfully all good again now.

I have this bastard condition! Been on low dose of Mounjaro since July and losing very slowly, only 1st 1lb iff so far... I think it's a trait with Lipedema from looking on Facebook groups. I have it in my legs maybe stage2-3 borderline, and it's started in my arms a bit. Too early to start measuring a loss in size but definitely less tight / softer fat since MJ. I get hip pain, which I think is associated to the weight I need to lug round on legs. This has completely gone since MJ, I can just feel my strength needs building up. BUT! I can practically gallop upstairs now. Bloody hate hate hate lipedema. So fucking unfair.

No chance of lipo for me due to cost, but do swim (despite crushing embarrasment at getting in and out the pool, I actually love it) so will see how I can fit that in - interesting to hear that. Even having to plan a quiet time to go to the pool to limit leg exposure is making me feel ragey thoughts.

@stormageddmum eurgh totally get your frustration.

ITS.SO.FUCKING.UNFAIR

Sometimes I really struggle with the gravity of it all.

I'm glad to hear you have some benefit of Mounjaro. I ordered mine and received it but yet to take it! Will start next week for sure as have some time of for work.

It's so frustrating that the cost of liposuction is so high.

Do you wear compression? I really struggle with it. I go a good few days with it on and then months without as I hate the feeling and I get all 'why me, why must this be my reality!!!'

@828Pax I'm scared of starting it and then being like when is the end date? Can I afford this forever?!

Soooo unfair

Joining in because I have lipedema too and am on week 3 of wegovy to see if it helps. I haven’t lost any weight so far but early days and all that.

I’ve already had a gastric bypass and have lost 14 stone over the last 3 years and have seen a massive improvement in my lipedema, I’m not as tight and swollen and sore anymore. The laxity of the skin on my legs means that the fibrous tissue isn’t held in place so is very visible - so despite the significant weight loss I’m still not comfortable with showing my legs. I also have a lot of fibrous tissue in my upper arms.

I suspect that a proportion of the weight I have still to lose is made up of excess skin and lipedema tissue, but we shall see!

@SwirlyShirly thanks for sharing your story

I hope the Wegovy makes a difference for you

14 stone is phenomenal!

I understand what you mean about the laxity of the skin.

Hope the jab works for me. Would love to lose some non lippy fat big mainly take away the pain!