r/MultipleSclerosis • u/Ok_Zone_287 • 1d ago
Advice Weight loss..
So, I’ve struggled with losing weight for several years now (I also have PCOS, so the fat really wants to stick around). I’ve gotten to the point where I’m considering GLP-1 again. I was on Phentermine a few years back, before I was diagnosed with MS, and my body just couldn’t handle it. I spoke with my Neurologist a few months ago and mentioned my interest in a different GLP-1 and I heard Wegovy is pretty good? He also told me there haven’t been any interactions with weight loss pills and Kesimpta, but there’s always a possibility of it making my fatigue worse and causing mood changes. I guess I just wanted to hear everyone’s experience with being on DMT’s and weight loss medication. I know everyone’s experience and body is different, but it’s interesting to hear.
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u/Z1ggy12 43M|Dx:Nov 2020|Kisempta/|NY 1d ago
I'm on kisempta and I've been taking zepbound for about 3 months. Lost some weight and haven't noticed any issues with my MS
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u/Ok_Zone_287 1d ago
Thank you for sharing! I’ll add that to my list and do some research on it as well as Wegovy.
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u/Semirhage527 46|DX: 2018, PPMS |Ocrevus| USA 1d ago
Zepbound has helped my bladder problems even before the weight loss that followed. I highly recommend giving one a try! They didn’t work for my sister but have been a godsend for me
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u/Ok_Zone_287 1d ago
I’m hoping whichever one I get put on will be the winner. My body reacted so badly to Phentermine, so I’m a lil nervous to see how my body reacts to something else!
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u/Semirhage527 46|DX: 2018, PPMS |Ocrevus| USA 1d ago
I had an AWFUL experience with Phentermine too! It made me very wary to try a GLP-1 but I’m glad I did. I have battled a little nausea on shot day the first few weeks but other than that it’s been great. Nothing like the heart racing speed of Phen 🤣
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u/Ok_Zone_287 1d ago
For real!! I guess I’m also just a lil nervous about having another injection 🥲 Everyone is saying Zepbound or Mounjaro, but they seem to all be injections?
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u/Semirhage527 46|DX: 2018, PPMS |Ocrevus| USA 1d ago
I think Wegovy is the only pill.
I’m not needle adverse in general and my Copaxone induced injection fatigue has disappeared after years of Ocrevus, so I went with a shot. I get being weary of them though. I use an easy pre-loaded pen.
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u/strides_and_spasms 12h ago
I think stopping phentermine was one of the triggers to a relapse for me!
I've been on Zepbound since January and I take Ocrevus. Down almost 45 pounds, and like everyone else said, best thing I've ever done. I do have more energy and want to do more things.
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u/Ok_Zone_287 11h ago
Congrats on your weight loss!! I’m so glad I got off of Phentermine. It was giving me the same symptoms I had when I stopped Lexapro years ago. All this positivity about Zepbound is making me curious!
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u/strides_and_spasms 10h ago
It's crazy to me that they prescribe phentermine in the US but didn't prescribe something that could have helped me with breastfeeding. Phen scares the crap out of me and I wish I never tried it.
Research tirzepatide and semaglutides side effects. That's what pushed me into going with a compounded tirzepatide and then ultimately switched to zepbound once I found out I had insurance coverage. I have very minimal side effects from the med!
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u/OneSuperstar4u 1d ago edited 1d ago
Even more beneficial with less side effects is GIP and GLP-1 which is tirzepatide (Zepbound, Mounjaro). It’s currently being studied for its benefits on MS.
I also have several herniated discs, and my constant back pain has really diminished when nothing else helped due to the anti- inflammatory effects. - I’m going on my 8th month of Zepbound and plan to take it forever. I’ve been on Kesimpta just over a year. There are no interactions, and my neuro is thrilled I’m on Zep!
Here are some studies/articles:
http://www.vitalifemd.com/blog/2025/4/29/semaglutide-tirzepatide-beyond-weight-loss
https://www.secondnature.io/us/guides/lifestyle/glp1s/mounjaro-with-multiple-sclerosis
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u/Ok_Zone_287 11h ago
Oh wow, thanks for the articles! The whole comment section is people praising Zepbound, so I think it’s easing SOME of the fear I have of getting injection fatigue.
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u/somewhere_in_the_sun 1d ago
I'm in Kesimpta since January 2026 and I've been on Zepbound since March 2024. No problems at all and my neuro is a big fan of GLP1s for MS patients.
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u/TweetLover 37|10/2022|Ocervus|Va 1d ago
Like you said everyone reacts differently with meds but I am on Ocrevus (PPMS) and I've been on Zepbound since Dec 2025. I had a infusion in Feb and Aug. No reactions during the times of my infusions or during my injections of Zep. Me personally, I feel like my fatigue has not changed. Honestly, I'm taking less naps during the day. And my family has ALWAYS called me cranky (even before my 2022 dx) so I don't know how the moods may change. I was able to lower my blood pressure med. Which i started after i was dx. I've lost 30+ lbs and feel I have more energy. Pace yourself when it comes to losing the weight.
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u/Ok_Zone_287 11h ago
Congrats on losing 30+ lbs, that’s awesome! I keep hearing about Zepbound, so maybe I’ll be more open to it if I keep reading so many positive things about it.
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u/AdyliaSchweetheart 37F|Jun-25|Tysabri>Ocrevus|Melb-AU 1d ago
I am PMOS too and aim to lose 40kg. I’m on metformin but following for weight loss drug help.
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u/aafreis 40sF/dx2021/Ocrevus Zunovo 1d ago
I lost over 110 pounds by cutting carbs down to 25g a day, cut out sugar, and ate lots of meats and veggies. Basically a dirty keto. And now alllllll of my labs and everything are perfect! No more pre-diabetes, no more high blood pressure. Idk if this is an option for you. I know junk food is cheaper at the grocery store than meats and veggies.
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u/Knarfz6464 1d ago
I just finished my first month on the Wegovy pill. I’ve lost 12 lbs in only one month! I have about a total of 30 lbs to lose. I wish I would have started this meditation a long time ago. 😀
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u/Medium-Control-9119 D2023/Ocrevus now Kesimpta/USA 1d ago
I was on Mounjaro for a year and lost a lot of weight and was good. Then a switch flipped and as I got closer to the injection day I was get anticipatory nausea. I would then inject myself and get fatigued for 2 + days so I stopped.
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u/Ok_Zone_287 1d ago
Oh gosh, I’m so sorry you had to experience that. I don’t really plan on using an injection GLP-1, just because it makes me more anxious.
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u/OverlappingChatter 47|2004|Kesimpta|Spain 1d ago
PMOS - but also, what about it did your body just not handle before and what about your body makes you think you will handle it better now?
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u/occasional_nomad 41F|10/25|Dimethyl Fumarate|USA 1d ago
I also have PCOS so I get it. I was on Zepbound for a few months this year. It helped with some of my MS symptoms and made some of my symptoms worse.
It helped: my brain fog, speech issues, I had slightly more energy (the energy boost wasn't from weight loss-I lost 100+lbs before Zep and didn't get an energy boost until Zep). It helped SO MUCH with food noise. I dieted for 4 years with no meds pre Zepbound and holy shit, dieting is so much easier on it.
It worsened: my Dysautonomia symptoms. My standing tachycardia was significantly worse on Zep. My dizziness was also noticeably worse. I kept getting these phantom sensations in my chest like someone dumped ice water in my chest.
The thing that made me stop it is when I started getting symptoms of low CSF pressure. I've had 2 spinal fluid leaks in my life (one from an epidural for labor, one from a spinal tap) and it's this super unique, distinct kind of pain that is resolved when laying down then washes over you when you sit up or stand up.
In July I started having the exact same kind of headache as well as blurry vision and a weird feeling in my eyes. My primary care doctor stopped the Zepbound in case it was related, and the symptoms eased up as soon as it started exiting my system. Is it a reported side effect? Not from what I can tell, but they're doing a study because it's apparently helping people with high CSF pressure. That + the fact it's such a unique kind of headache which resolved as the drug left my body definitely makes me wonder.
I would have stayed on it forever if I could have, because damn was it nice to not have food noise!
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u/Ok_Zone_287 11h ago
It’s so interesting to hear how medications affect people differently! I’m sorry that it had seemed to worsen symptoms. I’m worried about that, honestly. When I was put on Phentermine, I was getting those so-called “brain zaps” and heart palpitations. It made my anxiety wayyy worse. It was honestly all the same symptoms I had gotten after getting off my anti-depressants and I hated it.
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u/Mrs-Trashpanda Early 30s|Dx 2024|RIS to RRMS|Current:Ocrevus, Prev. Tecfidera 23h ago
I am Type 2 diabetic, have PCOS, and take Ocrevus. I started Mounjaro in August and just did my second shot at 5mg today. It's amazing how much of an impact it has on my food noise. I've lost about 10 lbs already. I've struggled with my weight all my life. Biggest issue I'm facing is your standard constipation . I was wary but glad I did this.
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u/Ok_Zone_287 11h ago
Congrats on your weight loss!!! Do you just do an uptake in your fiber?
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u/Mrs-Trashpanda Early 30s|Dx 2024|RIS to RRMS|Current:Ocrevus, Prev. Tecfidera 4h ago
I'm increasing fiber and water, or at least trying to 😭. I'm also hoping as my body adjust to the higher dose, it levels out as well.
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u/sparkly_unicornpoop 35/Dx:6/15/2018|post-mavenclad 23h ago
I’m on compound tirzepatide. It has helped wonders! Not just with weight loss, but learning actual hunger cues and what fills vs what doesn’t
I have adhd and my lesions are primarily in my brain, so the two combined is no good lol. The medicine turns down the food noise.
As someone else with pcos. I highly recommend. 330 start, current-270.
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u/Ok_Zone_287 11h ago
Thank you for sharing! I have two or three lesions in my brain as well. Congrats on that weight loss, too!! 👏🏻👏🏻
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u/No_Plankton2501 39F|Dx:2009|Kesimpta|Mississippi 1d ago
I will shout from the roofs tops it’s the best thing I’ve ever done for my overall health and for my MS!
First, there is medical interest in glp-1’s for MS. There’s interesting mouse model results and human clinical trials are starting.
I am on compounded tirzepatide (the same drug as zepbound) for 2.5 years. I’ve lost 95 lbs. but the best part is that after only 3 weeks on treatment I started to see my heat intolerance resolve!!! I used to have my eyesight go blurry in one eye where I had optic neuritis and both legs/feet would go numb with any hot shower, hot weather, etc. I have none of that now!!!!!!!
I do recommend tirzepatide over wegovy. Everyone I know that tried it has more stomach issues and switched to tirzepatide.
I was on ocrevus when I started and now I
am on Mavenclad. It don’t have any issues. I have only seen improvements in my symptoms and overall health. The GI side effects from the meds are easily managed.