Hi everyone. I have CNS Lupus, RLS, Inflammatory and osteoarthritis arthritis. Ever since being diagnosed with Lupus (10 years ago.) I have struggled with my weight and put on 3 stone. I’m in my 50s and my main lupus symptom is pain so exercise has been hit or miss.
I have tried a different approach over the past 2 months and been doing cardio 6 days a week and yoga. I’m enjoying it so want to keep going but my weight is not shifting and my pain has increased, which I’m willing to take, if I see results. My family also has a history of heart attacks. I’m miserable with my weight and i know it’s not helping with my joints.
what are people’s thoughts on mounjaro with regards to helping lupus and helping with weight loss?
Many thanks
Ange
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ange726
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Hello ange726,I have struggled with my weight since my diagnosis 12 years ago. Just like you, I have osteoarthritis. I have had 3 arthroscopies on my right knee. The last was just a month ago and my surgeon said it will be helpful to more loose weight and reduce the pressure on the knee.
I am not good with the gym because my fatigue and pain gets in the way. So I end up paying for a membership I barely attend. However I started playing batminton in spring and because I enjoy it, it's easier for me to look forward to it and I have started loosing weight. I have also added weight lifting but working closely with the trainers and knowing my limit.
If you workout 6days a week and your pain is increased. Your body might just be saying it's too much on it. It needs time to heal and rest. That is one of the ways we can manage our condition. Listen to your body and know when it says "I have had enough". Look at the weight loss from an angle of fitness. Spread it through the week, 2-3times to allow your body recover and adjust.
Also understand that hormones and stress also play a role in weight again. So your body is not just struggling with the Lupus, you are dealing with alot. So be kind to yourself and take it easy.
I don't know about the mounjaro, I always feel am already on a lot of medication and not keen to add more. But you can always have a chat with your doctor.
Hey ijeasike. Thank you so much for replying. Yes you are absolutely right about balancing out the fitness and I totally agree that fatigue plays a huge part in it all. I thought in my head that if I worked out more it would help with my joints and weight forgetting that it could also have a detrimental effect. It’s sodding difficult isn’t it!!
Sorry to hear about all your ops on your knee. Recovery must be painful and long. Like you I think I’ll introduce light weights and see how I get on.
I also was diagnosed with sle 10yrs ago. All though Ive had autoimmune issues since puberty.
I also think I developed lipedema from puberty. I have been over weight/obese since then. I have worked tirelessly to keep my weight stable, but I have never been able to loose any weight. Over the decades I have done it all, all the diets! Any NHS weight management support I got was, eat less move more, even though I was eating less than 1000 cals a day and I've been doing that for years. Not one person diagnosed my lipedema until recently and it was suggested I try Mounjaro. Which I've had to do privately.
I have been on it for 2 months and I have lost 10lbs. Compared to others, this is a slow loss, but I've never been able to lose weight before, so I'm hopeful it will keep coming off.
People think this is a cop out, it isn't! There are side effects and does take work.
You won't want to eat or eat much, but you must. You also need to prioritise protein. Some days I just eat cottage cheese and BOL power shake. So my food choices are not as varied or as healthy as I normally would eat, however it's not going to be forever.
Before starting MJ I was vegan, I found it hard to get my protein in, so I've added greek yogurt and cottage cheese. I also spent the year before, until now intermittent fasting. Eating in 6hr or less window, I didn't loose a lb! Now I've opened my eating window to a 8hr, so I can get the protein in.
If you have the money I'd go with a company like Juniper. I started with them, but realised I couldn't afford to stay with them. So now I'm with Chequp.
Thank you so much for getting back to me and telling me your story. It definitely resonated with me. I too have tried every healthy eating plan under the sun. It gets exhausting!
I only found out about mounjaro because my sister has taken in, due to health, and lost 50lbs in 5 months. She says it is hard work and you really have to plan your food but she is no longer a heart attack risk.
I think I will wait until the new year and if I’m still not seeing results then will speak to my rheumatologist nurse to see what she thinks.
Good luck with your weight loss journey. I hope it improves your health without too many side effects. 😊
It's so good your sister has gone through it and had such great success! That's a fantastic loss. She will be a wealth of knowledge for when you start.
There are a few FB groups, like The Mounjaro uk support group. They have lots of before and after, as well as journey stories, so many inspiring successes.
I think hormones have a massive part to play in stubborn weightloss and autoimmune diseases. However I feel this isn't being investigated enough! Hopefully they will get their act in gear and future ladies will never have to go through what we've been through! I hate that people just presume they know me and my diet just from seeing my size. Not know the lengths I've gone through just to maintain as this massive weight.
I know there has been so many reports of autoimmune diseases as well as other illnesses improving with these GLP1s.
I don't want to get too excited by them, but I do pray that it lives upto it's hype and is a wonder drug
h’have you thought about trying an app like MY Fitness Pal? I have found it extremely helpful in losing weight and maintaining it. Weight loss is ultimately calories in/calories out. I gained 30 pounds during a number of years when I had significant joint pain and frankly found it almost impossible to exercise. The sad thing is even if you are not that overweight the fat on your body causes elevated inflammation and makes your SLE much worse. I found the app I mentioned showed me exeacrly how much calories I took in. Because I was not very active I had to be rigorous about what I ate. Even little things that added 100 calories (a cup of coffee with cream and sugar) add up over time and you gain a pound and that pound of fat especially hurts you if you have an autoimmune disease. In the past to get the information that the app provides I would have needed to keep a food diary and see a dietician.
Many thanks for taking the time to reply. Yes I have tried MyFitnessPal. I have tried so many things. I’m actually on Noom right now, which I really love because it’s educational and you keep a food diary but my weight is still not shifting. I’m not giving up and I’ll look at all options going forward. I’m speaking with my lupus consultant tomorrow so will see what he suggests.
hello ange 726, go for it. I am doing iMJ privately and have lost 10lbs in 6 weeks, which is slow by other peoples standards but fantastic for me. I know when I can loose more it will certainly help my painful joints and muscles. When you have lupus I think we are all desperate to feel as well as possible and although I am in a lot of pain at the moment, feel I am doing something really positive for myself. I am proof it works, like one of your previous responses - - go for it 😊
Thank you for taking the time to reply and for your super positive story. I’m so pleased it’s working for you and you are so right when you say, we all want to look and feel better with this awful condition.
I actually have a phone appt with my lupus consultant tomorrow, so going to speak to him about it.
I started Mounjaro in July as I needed to lose weight for reflux operation. I stayed on it after the op as I found it incredible, it’s honestly changed my life. I’ve lost 44lbs so far and still have more to go, but I am so relieved to have finally found a solution after a lifetime of being overweight/obese. Over the years I have tried literally everything! Prior to my lupus diagnosis I was very sporty, competing in cycling time trials and even did a half Ironman. But I was always overweight and couldn’t ever consistently lose weight. Obviously it became even harder after developing lupus!
If you’re planning on trying it, make sure you drink loads of water with electrolytes, get lots of protein and fibre. As you will lose your appetite make sure that the food you do eat is high in nutritional value and that you are eating regularly. I know some doctors suggest increasing the dosage every 4 weeks, but I would say stay as low as possible as long as it’s working. I’ve only just gone onto 5mg and I’ve been 4 months!
There’s been lots of people saying it helps with autoimmune illnesses as it helps reduce overall inflammation. I have definitely found some benefits with this. Unfortunately the flares I have had seem to be doing more damage so I’m moving onto Rituximab soon and waiting to hear if I need to stop Mounjaro whilst I have the treatment.
Many thanks for reply and what a wonderful and positive response. Like you, I was really fit before lupus. 8 years on and 3.5 stone later, I’m now able to go onto my peloton bike every day but between menopause, lupus and arthritis, it is impossible to lose any weight. My rheumatology Dr has said it won’t interfere with my meds so I’ll keep trying my weight loss journey into the New Year and if there is no change then I may try it. So grateful for the advice. Congratulations on your weight loss journey thus far and wishing you a healthy future xxx
No worries I’m happy to help. I actually got my initial prescriptions from a private doctor that my gastro doc recommend, I’ve actually decided to move to an online pharmacy as he is keen for me to keep upping the dosage but I don’t see the point as I’m steadily losing weight on low dosages, I also have to pay him appointment fees for regular reviews,
I was looking at using Boots as you get advantage card points, but I have a friend who is using MedExpress and she finds them good,
I’m not sure if my original prescribing doctor sent a copy of my prescription to my GP, but I just informed them and my rheumatologists that I was on it so they could add to my record.
Great that your GP is supportive and hopefully there’s no issue with your lupus meds.
Let me know how you get on and get in touch if I can help with anything else
Thank you so much for your reply. All makes sense. I’m so happy for you that this is such a success. Like you, I will be sticking to a low dose too, hopefully.,
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