Surprise side effect!: I was started on... - My MSAA Community

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Surprise side effect!

Cwright170994 profile image
β€’22 Replies

I was started on oxybutinyn to help with my urinary urgency and stuff, and I've noticed my appetite has decreased! To the point where I'm comfortable not having the appetite to have my evening meal! I think it's helping me lose weight, not that I really needed to in the 1st place πŸ˜…

My pharmacist called me up yesterday, doing the 2 week check in after starting it, and she was surprised at that side effect! It's not been reported by other people, and so it's not on the side effects part on the instruction paper you get in the box πŸ€·β€β™€οΈ might be put on now 😁

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Cwright170994 profile image
Cwright170994
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22 Replies
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CatsandCars profile image
CatsandCars

Wow, that's really unfortunate. From YouTube, I seem to remember that you are not in need of a weight loss drug. Gavin Giovannoni, the British MS neurologist, says that old anticholinergic drugs like oxybutyin are bad for our brains. There are other drugs he prefers. One is Trospium in concert with another drug, which I can't remember, but I can try looking it up. A good one in the US is mirabegron.

CatsandCars profile image
CatsandCarsβ€’ in reply toCatsandCars

Here it is.

Giovanonni's bladder advice
Cwright170994 profile image
Cwright170994β€’ in reply toCatsandCars

I don't know what medicines in the UK that help weight loss, as I've never needed them πŸ˜• my mum and nanna joked that my husband has a chance of sneaking a pill here or there, because he's looking at loosing weight himself! I joked back to them that he could do, as the pills are in a white bottle πŸ˜… he hasn't done, because he respects my medication and why I need to take it ❀️I trust my bladder and bowel nurse that prescribed them in the first place, as she's had experience with people that have urgency and/or frequency. She's got me doing self-catheterising when I go to the toilet before bed, to help me stop having to wake up during the night to use the toilet. I don't trust people that I've not interacted with for my health before, and so I won't seek him out and listen to him.

CatsandCars profile image
CatsandCarsβ€’ in reply toCwright170994

I wasn't thinking you would go see him or find the drugs yourself. Perhaps you could ask your nurse about them, since you posted about having a problem with what she prescribed. Or not.

Cwright170994 profile image
Cwright170994β€’ in reply toCatsandCars

It's not a problem! Just a happy little coincidence 😁

CampTiff profile image
CampTiff

I’m on oxybutynin and have been for a while. I wish I had the weight loss side effect! Ha ha!πŸ˜†

bxrmom profile image
bxrmomβ€’ in reply toCampTiff

Me too! That would be a nice side effect πŸ˜‰

CV97 profile image
CV97

Are you drinking more with Oxybutynin? Maybe that's reducing your appetite. When I was on that, it gave me such terrible dry mouth that I asked to try something else within the first couple months.

I now take one of the newest overactive bladder meds, vibegron, which works extremely well for me. It's US brand name is Gemtesa, and it looks like it's been recently approved in the UK under the name Obgemsa.

Cwright170994 profile image
Cwright170994β€’ in reply toCV97

I don't think I'm drinking more than I normally would do back when I wasn't on it. I'm still having my morning cup of tea, possibly a mouthful or so of water before then to do my meds, and then not having more cups of tea/water than normal πŸ€·β€β™€οΈ really odd that we have different side effects πŸ˜…

CV97 profile image
CV97β€’ in reply toCwright170994

It is wild how we all experience medications differently! I tried dry mouth spray and everything. Night time was the worst. Maybe I was waking up less for the bladder, but still awake just as much for the dry mouth. After going through several medications, I can definitely say this newest med has been the best one I've used.

Cwright170994 profile image
Cwright170994β€’ in reply toCV97

I'm still having to wake up at night, no matter if I've stopped having a proper drink after 8 and done a catheter before bed! I put it down to my body finally getting rid of water it's built up and hasn't yet thought, "ehhh, we need this!" Husband likened the catheters to jump-starting my bladder to get rid of the stuff when I've gone into retention 🀣

I've never experienced the dry mouth bit, but I can understand why you're happy you're on a new med 😁

Robsmom profile image
Robsmom

I've been taking Oxybutynin since February and I never had any decrease in appetite. I wish it did.😁Also, I have extreme dry mouth and I never connected the two. πŸ€¦πŸΎβ€β™€οΈ

I also don't take it as prescribed, instead of twice a day, I only take it once a day.

Cwright170994 profile image
Cwright170994β€’ in reply toRobsmom

I'm also once a day, and I take it in mornings with my other once-daily med (cholecalciferol).

Robsmom profile image
Robsmomβ€’ in reply toCwright170994

I take mine in the evening so it works overnight. I get up 1-2 times during the night instead of 4-5.

mrsmike9 profile image
mrsmike9

I took that for quite awhile. It made me have dry mouth, too, so I drank a lot of water, which made me have to pee more. Hamster and wheel effect. I also learned that it can cause dementia as a side effect. My mom had that and I do Not want to go there! I saw a specialist who said Oxybutynyn as a Last resort. He changed me to Myrbetriq. SO much better! No dry mouth and one little pill lasts 24 hours, so you don't have to take 2 of the other. Works for me!

CV97 profile image
CV97β€’ in reply tomrsmike9

My pcp did not have a high opinion of Oxybutynin either. When we were discussing the change from Myrbetriq to Gemtesa, he called Oxybutynin "evil", if I recall correctly πŸ˜‚πŸ˜‚. I felt the same way about it and told him going back to that was not an option!

Myrbetriq was good for me, but insurance stopped covering it. I switched to the new med Gemtesa because they made me. I was mad at first (how dare insurance make me change), but am now so glad they did! Myrbetriq was good, but Gemtesa is great!

I use the manufacturers coupon for Gemtesa. Can't beat $0 for 90 day supply! That's not a typo. Zero $!!

AquaZumbaFan profile image
AquaZumbaFanβ€’ in reply toCV97

Wow!! Zero co-pay!! I have been on mirbetriq since β€˜21 maybe it’s time for a change.. how does the Gemtesa work better?

CV97 profile image
CV97β€’ in reply toAquaZumbaFan

AquaZumbaFan , Gemtesa has fewer drug interactions and doesn't have a high pressure warning like Myrbetriq, which is why the insurance company chose to cover Gemtesa instead. The manufacturers copay, if eligible, is $10 a month, or 90 days for $0. gemtesa.com/savings-and-pri...

I started taking it in spring of '22. At the time, I was happy with Myrbetriq. It was better than the previous meds I took (Oxybutynin & vesicare). It worked well enough that I felt like a functional adult & didn't need to run to the bathroom as often.

Gemtesa is just... better... I rarely have to 'rush' to the bathroom. My holding strength is better after a couple of years. The only minor downside I've had is having to drink enough water. If I don't drink a couple glasses of water a day, my bladder feels a little irritated. It's not really a bad thing to hydrate though!

AquaZumbaFan profile image
AquaZumbaFanβ€’ in reply toCV97

Great to hear! I have an appointment coming up. I will totally ask my Doctor πŸ€—

Blanketttime1 profile image
Blanketttime1

i've noticed, like another friend i met on here, that i tend to have rare side effects. it's often super obnoxious, so i'm glad you've had a positive side effect!

carolek572 profile image
carolek572CommunityAmbassador

Lots of medications mentioned in this post for bowel and bladder issues, Cwright170994 ! I will bring this topic up at me next neurologist appointment. Thank you :-D

Cwright170994 profile image
Cwright170994β€’ in reply tocarolek572

You're welcome πŸ˜† gives you something new to talk about when you see your neuro 😜

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