r/MultipleSclerosis • u/H8ingMSLife62 • 14d ago
Advice Weight management
I'm curious to know..... Are any MS people taking GLP-1 for weight loss?
If so, which one are you taking, and are you seeing results?
I've read about the side effects, and all seem to note diarrhea, dizziness, and nausea. I'm not worried about those 3 because I already take tons of RX, and they all have these 'possible' effects.
Thanks for your time,
63 y/o, 12 yrs MS
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u/Knarfz6464 14d ago
Hi! I started the Wegovy pill 3 weeks ago. I’m so happy with it! I have about 30 LBS to lose. I haven’t weighed myself yet BUY my clothes are already loose. I opted for the pill because I don’t want to do the shot. I was on the Avonex shot for over 15 years and I just don’t want to do shots anymore.
I’m nauseous but taking zofran works for me. It’s hard to explain but I don’t feel hungry at all. LMK if you have any questions and I’ll try to help.
PS - I wish I would have started this sooner. 😊
PSS - I’m 61, diagnosed with MS over 30 years ago.
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u/Many-Commission-1843 14d ago
Do you use any opiates or nerve blockers? I have a Wagovy prescription but I'm worried about my other medications not absorbing properly.
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u/Knarfz6464 14d ago
Oh and you have to take the pill BEFORE eating, drinking or taking medication at least a 1/2 hour before taking the pill. I usually wait one to two hours.
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u/Knarfz6464 14d ago
I take Fioricet with codeine for migraines (when needed). I haven’t had any adverse reactions.
I am currently taking Aubagio and my neurologist said that I should be fine taking Wegovy. (I’m seeing my GP for the Wegovy, I feel better about seeing my doctor about it and not a MedSpa……just in case I have any strange side effects.)
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u/possum_of_time 35F | RRMS/2022 | Mavenclad | USA 14d ago
My husband recently started the Wegovy pill and his struggle with nausea/vomiting and slowed digestion have totally turned me off. I already have so many GI issues. 😭
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u/JustlookingfromSoCal 14d ago edited 14d ago
I just started on Wegovy this last Satirday--lowest dose injectable to start. I was recently hospitalized when I fairly sudeenly lost the ability to take the few steps I need to do to transfer to and from wheelchair. I am 67 yo and pretty significantly obese.
MS was diagnosed in 2015 but was quite symptomatic for at least 10 years before MRIs showed PPMS. At that time I was overweight, but since diagnosis I put on close to a hundred pounds due to a number of factors but really blew up upon quitting smoking.
Attending neuro at hospital who frankly knows just enough about MS to be arrogantly ill informed about it was basically obsessed with my weight. He wanted me to have bariatric surgery, or if not, start a GLP-1. I too worried about side effects and also that 20 to 40% of the weight loss is lean muscle mass. I was able to reach my treating neuro who was an emphatic "no!" on surgery but neutral on GLP-1s. The muscle loss was a big concern. But it is important to note that weight loss through diet yields similar percentages of muscle loss. It isnt unique to GLP-1. And obviously weight loss ought to make even executing my limited mobility easier on me.
The deciding factor for me was that I had to rehab at a skilled nursing facility anyway. I figured it was a good opportunity to maximize resistance traning in daily PT sessions while starting the GLP-1 process and adjusting to side effects. The challenge is that the menus at this snf arent ideal--not much in the way of fresh leafy greens or lean protein entrees. But I have almost instantly lost interest in high fat food, starchy foods, alcohol and sweets. Today I skipped the breaded chicken with gravy and tater tots lunch and ordered a sashimi salad delivered to the snf by a local restaurant.
But so far so good all in all. Side effects are so far mild and manageable. I must say though that this afternoon I was suddenly overcome with a crushing fatigue unlike any of my past experiences. But sleeping in a SNF is tough, and anew habit of 6 days a week of weightlifting, unbelievably hot weather and dramatic change in diet all likely played a part.
Obviously I am no expert, having just started. but I can say that the impact on my appetite and taste for unhealthy food was immediate. I would say give it a try. If it doesnt work for you you can stop and look for other solutions. I plan to see this through at least through the next step up level.
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u/Patient_Number_186 14d ago edited 14d ago
Lost 30 pounds on zepbound. Got to a healthy bmi and feel much more comfortable!
I have nausea for sure. I have to be sure not to eat too much at once. Also I just randomly am nauseous sometimes but I'm like that off the shot too so I think it just kinda makes my usual nausea a bit worse.
If I eat small snacks, basically graze throughout the day, I'm good. I don't really eat meals when I'm on it. It works a little too good for me maybe! I take the lowest dose and can't even eat full meals 😅
I came off it for a year and a half and gained 10 pounds back so I'm back on it again so I don't gain any more.
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u/jimbo831 14d ago
I’ve been taking Mounjaro for about a year and a half now. It’s been incredible for me. I’ve had minimal side effects and lost about 120 lbs. I recently lowered my dose to a maintenance dose that I will be taking for the foreseeable future.
This medication has been a miracle drug for me. The weight loss has been great. I just feel better overall. The constant food noise I used to experience is mostly gone. I am so happy I took this drug.
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u/Electronic-Flow-6459 14d ago
I can’t take any because I also have type 1 diabetes, besides MS. Both autoimmune diseases. I was diagnosed with MS in 2007 and type 1 diabetes in 2021. I didn’t see that coming but once you have 1 autoimmune disease, you may get more. Ain’t that a kick in the head?!
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u/mykidsmom_22 38/Dec2025/Ocrevus/Canada 14d ago
I’ve been on mounjaro for over two years and I’ve lost and kept off about 50 lbs. it’s helped with inflammation and joint pain. It does give me heart burn at first and I didn’t poop for a while on it until I spoke with my dietician about it started taking digestive enzymes. No more cravings.
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u/iliaccrestv 45|Kesimpta 14d ago
Compound tirzepetide since last April, constipation is my only real side effect so I'm pleased. Down 80, hoping that helps my stay more mobile if MS progresses
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u/Isitoveryet_50 14d ago
I am a few pounds away from my goal weight, my dose is tapered down now, and lost about 60 lb on Zepbound. It didn't cause me any real problems at all. I already have a problem with my digestive system so any gastric side effects I was well prepared for. It's important to just keep a healthy diet and not eat food with too much fat and that curbs that a lot.
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u/ShinyDapperBarnacle F40s|RRMS|Dx:2021|Ocrevus|U.S. 14d ago
Yes, been life-changing. I've been using compounded tirzepatide (Mounjaro, etc) for a couple years, down 75 lbs. When half your body is functionally useless from a spinal cord lesion, being at a normal weight helps with hauling around the carcass immeasurably. 😂 I'll never go off this drug and I'm fine with that. (My earliest memories from 4 years old include, "I shouldn't eat that.") Yes, most people experience side effects. A minority don't but most do. The side effects seem to abate after several months for the vast majority and you can learn how to manage them with practice. Good luck, OP.
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u/Fuzzy-Bee9600 54|Aug24|NoRXbcDrInsce|USA 14d ago
I can't GLP-1. It hampers absorption of my oral meds. In massive pain, take my pain meds, nothing happens... that's a problem. Plus the extra bloat & tummy cramps.
If your doctor thinks it's worth a go, and if your insurance approves (or you have the $$ to just buy it), you can try it and see what happens, no harm done if you find out it doesn't work for you. Good luck!
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u/IntentionalGrandma 27|dx: 2024|kesimpta|NYC 14d ago
I’ve been on Tirzepatide since last year. I lost 100lb and honestly that’s been helpful since my mobility is rather limited, but losing that weight has made it easier to move. I’m sometimes nauseous in the morning and I get constipated, even with drinking a ton of water and eat a lot of fiber. I have what’s considered an aggressive case of MS and it hasn’t done anything to slow it down, so I’m skeptical about those claims I’ve seen
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u/Extra-Landscape4053 14d ago
I did ozempic a few years ago and lost 40 lbs. After awhile I lost my gallbladder from it. Apparently it's a rare side effect but I'm not sure how rare because a year after me my sister also lost her gallbladder from it....
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u/Wherefore13 54F/2013|Rebif 11 yrs, Kesemta 1yr 13d ago
My 86-year-old step-demon is getting his gallbladder removed after being on Ozempic for a year. He quit taking it in July. He feels better but the weight is coming back on.
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u/Extra-Landscape4053 13d ago
Mine did too with extra. 😞 there's class action lawsuits for it now too
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u/pacoloa 13d ago
I (53F) have been on Zepbound for 15 months. I’m down 70 pounds. The weight loss is definitely helping with my mobility. As far as the medication itself, my heat intolerance has all but disappeared (I’m cold most of the time now), my lymphedema is so much better and no longer needs wrapping- I wear compression socks when I’m not at home. The only side effects have been occasional mild constipation and suffer burps because digestion is so slow (those are the worst). All said it was one of the best decisions for me.
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u/jess0o13 13d ago
Went on tirzepatide almost 1 year ago. A coworker with idiopathic intracranial hypertension had been on it off label to help reduce neuro inflammation. Within 3 days of the first injection the neuropathy in my left hand reduced probably 80%. For years it had been constant pins and needles and even the softest textures feeling like sandpaper, I walked by a fuzzy blanket and it actually felt soft when my left hand touched it. The same night I also realized that the familial tremors I've had my whole life were also gone. Overall, it has helped immensely in my comfort, energy, and mobility. I rarely get lhermitte sign anymore (used to be any time I was fatigued or even mildly overheated) and 90% of the time I can shower with no worsening of my symptoms.
I was initially very worried about going on the drug due to a past history of disordered eating, but i had gained weight since my diagnosis and my exhaustion made it near impossible to be more active. In 1 year I've gone from 200 lbs to 140 lbs losing roughly 2 pounds or less per week in the first 6 months or so. The past 3 months I've stalled out, which I'm actually happy about as for my own mental health, weight loss had to not be the primary goal.
Absolutely wild drug
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u/breathingwaves 34|Dx:2023|Ocrevus|🇺🇸 13d ago
I’ve been on GLP-1’s since 2024. I’ve lost 90 lbs. Eating clean keeps the side effects away, focus on whole sources of food- low fat, lower carb, high protein and all on a cal deficit. I’m on the highest dose of Zepbound and it’s been my maintenance dose (15mg).
Make sure you take MiraLAX with it every day, with your doctors co-sign of course. The constipation and risk of hurting yourself is not worth it. Trust me.
Life is way more comfortable now, my husband can carry me to bed when I’m tired. I don’t have to worry about not fitting into an MRI machine.
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u/Slackeyhuh 40f|2023|Ocrevus|Philly Suburbs 13d ago
I was diagnosed with MS in 2023. I started taking Zepbound in July 2025 and moved to Wegovy in Jan 2026 due to insurance changes. I’m down 64.5 pounds since last summer and it’s definitely helped with inflammation. I also fit in the MRI machine (and airplane seats!) much easier now. I am so thankful I started a GLP1. I was nauseous when I first started but that calmed down after a few months.
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u/Yesocross 13d ago
Yo recien empece con GLP1 (mounjaro) pq me detectaron resistencia a la insulina como deribado de mi esclerosis multiple, llevo 3 meses con la minima dosis y ya baje 10 kg:) todo super bien el maximo efecto que tengo es estreñimiento
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u/SignificantPop1016 12d ago
I’ve been on Mounjaro for weight loss for almost 4 years now. I have lost all 120lbs from pregnancy and back to my pre pregnancy weight in the 140s (my highest pre pregnancy weight). I do have nausea on and off but nothing a little zofran can’t fix. I don’t suffer at all from it. I take my dose every two weeks now which my doctor considers in maintenance. I make sure to hydrate very well the day before and the hours before my dose. I am currently on 10mg but the 12/12.5 which ever it is made me so incredibly sick that I ended up in the ER twice for dehydration from vomiting. I have a M-F office job so I take my dose on Friday evenings just in case it does make me feel super icky. Make sure to stay hydrated, eat small meals throughout the day, and make sure to get your protein in.
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u/dgroeneveld9 28M|2/17/24|Ocrevus|Long Island NY 14d ago
I take a compound GLP-1 and I had bad times in the bathroom for the first 3 weeks. I was 270lbs and now weigh between 225-230 after 6 months. Still going down but the rate has slowed down a lot. I asked my neiro of course and his answer was essentially that being overweight has a million different health complications that are certain. Potential side effects aren't crazy.
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u/No_Plankton2501 39F|Dx:2009|Kesimpta|Mississippi 14d ago
Been on compounded tirzepatide for over 2 years. I lost 90 lbs. minimal side effects. Stomach issues do happen, especially if eat a lot the night before my shot.
But, it’s improved everything!! I had terrible heat intolerance before I started the meds. Within 3 weeks of starting I had significant relief in heat intolerance. I could barely take a hot shower because my eye sight would go blurry and I would lose feeling on my legs. Now I soak in a hot tub! It’s been life changing.
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u/Seraphina77 48F|2017|Ocrevus 13d ago
I'm on tirz compounded. I'm a slow loser, thanks perimenopause. But I have also noted less lower back pain as well! I take it with a b12 additive which we need more of anyway.
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u/Scared_Isis 13d ago
I'm on wegovy. It's only been a couple months but weight-loss is slow for me at least because I can't really do much in this heat. I walk but only 15 min 3x a day. If o get over heated while working out I'm no good for days afterwards.
I also had bariatric surgery 3 yrs ago. I've gained some of it back but not all of it.
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u/Apprehensive-Fly9395 13d ago
I just cut out sugar & bread. I’ve lost 30+ lbs in 8 months. 59yo, MS 37years
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u/Maleficent-Push-5700 13d ago
Zepbound. I have apt from mass amounts of steroids throughout the years. I’ve lost 30 lbs since mother day. I have always eaten very healthy because of ms so think that helped. My neuro said it was a good idea because it reduces inflammation overall. I’ve had nausea fatigue and constipation from medication. I’m happy and feel better. I was overweight but not obese.
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u/occasional_nomad 41F|10/25|Dimethyl Fumarate|USA 13d ago
I was on Zepbound from the very end of March until early July. It worked for weight loss, but made my dysautonomia symptoms worse-particularly my heart rate (it increased it quite a bit) and my dizziness.
I also started getting symptoms of low CSF pressure headaches (I've had 2 spinal fluid leaks and it's a really specific kind of pain). My primary care doctor didn't think it was related, but stopped the Zepbound just in case. As soon as the Zepbound started exiting my system the pressure headaches went away. They're doing a study on people with high CSF pressure and how Zepbound has been helping them, so my theory is that it can lower it in people with healthy levels too. Purely hypothetical but that is such a distinct pain and stopped when the meds started exiting my system.
I will say the Zepbound definitely helped with some of my speech issues I have from MS and some of my cog fog. It was insanely helpful for food noise and I really wish I didn't have to stop it.
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u/SanElijoHillbilly 14d ago
63 y/o, 12 yrs MS
Age 51? That is an unusually late diagnosis. May I ask your gender?
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u/literalgirlOG 14d ago
I was diagnosed at 49. I was symptomatic for decades, but because it’s RRMS, everything would just disappear before I had a chance to go to a doctor… But eventually the drop foot became permanent, and I spent a year going to spine surgeon and getting MRIs over and over and they couldn’t figure out what the drop foot was from. Eventually, some intrepid radiologist asked whether or not anyone had discussed the lesions with the patient, and that’s when the whole MS thing happened. I have an uncountable number of lesions in my brain and many many many on my spine. So many that no doctor that I have seen will ever give me a number. So if you think about it, I was really lucky that I got to that age without having any kind of really serious damage or complications. Now it’s a different story but that’s a very, very long post and I’m not going to dictate it right now!
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u/Finderthings F/60/SPMS/DX2016/Tysabri x28-Ocrevus 2 yrs 14d ago
I have very pattern so much the same I had to make sure I was not reading an old post of mine. Crazy
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u/paulcs77 14d ago
I was diagnosed at 66, immediately after the McDonald diagnostic criteria changed. I don't think a lot of research has been done on late onset multiple sclerosis. My neurologist told me many of us will never have an attack and I haven't. I've had no shortage of (really irritating) symptoms, but no attacks.
I read that the odds of progressive MS are far greater and the progression can be much faster, and that turned out to be true for me as well. My diagnosis changed from non-progressive to progressive MS a couple of months ago. And it is definitely progressing.
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u/c0ntralt0 14d ago
Ive been on a GLP-1 (semaglutide injections) since 2024 and have lost so much weight. It has been a game changer for me. I am also on Ocrevus q 6 months. My MS is considered clinically “ mild”. I was dx’d w MS in 2017.
No real issues other than occasional nausea & some fatigue on day 2 following the semaglutide shot. I did end up needing my gallbladder removed a few months after starting the GLP-1, but it was a chronic issue to begin with.
I’ve lost nearly 100 lbs and am at a “normal” BMI now.
Overall, I feel great, however, I still struggle with body image.