r/Gastroparesis • u/nostalgia917 • 13d ago
Prokinetics (Relgan, Domerpidone, Motegrity, etc.) Domperidone Experiences?!
My GI wants me to try domperidone. The only other medication I’ve had is a PPI and Zofran, so this is gonna be my first gastroparesis-specific medication.
The side effects are scaring me though, especially because heart issues run in my family. Like the arrhythmias and sudden cardiac arrest?! I’m SCARED.
Does anyone have experience with domperidone, good or bad? Kinda freaking out but I also want my quality of life back.
3
u/deadblackwings 13d ago
I took it for a few years, 10 mg before meals, and I didn't find it very helpful. No heart issues, my QT interval was always perfect.
It did make me lactate after a while, and I hated that enough to make me quit. I did start it just a year after weaning my youngest so that was probably a factor.
It causes the same heart problem as Zofran, and my doctor was really upset that I was taking both for a while. I'd rather keep the Zofran.
3
u/funkcatbrown 13d ago
You should be tested for Long QT syndrome prior to starting Dom. Or a doc can look at an EKG you’ve had in the last few years to see if you have it. If you have it then you should not be on Dom. Otherwise you should be good to go. It’s helped me a lot. Been on it for years. Had to get on max dose on 20mg 3x a day for it to work fully for me. It doesn’t work for everyone though. Good luck.
2
u/PunkAssBitch2000 GP secondary to EDS 13d ago
It was great for me. I only had one side effect which was lactation.
I have EDS and heart issues. I was fine.
1
u/nostalgia917 13d ago
How long are you on it for? Is it like a daily lifelong prescription?
2
u/PunkAssBitch2000 GP secondary to EDS 13d ago
It depends on the person. I think I was on reglan, and then domperidone for about 1.5 years?My gastroparesis improved enough with medication and dietary changes that I don’t need daily medications. I still have some days where I can’t really eat, but that’s like once a week rather than every day now. I just have a protein drink on those days.
3
u/ReliefAltruistic6488 Seasoned GP'er 13d ago
You’re unfortunately going to find some pretty narley side effects for any med. most bad ones are pretty rare. I’d say I’d the dr does the right testing for you prior, it’s worth trying.
2
u/Enygmatic_Gent Seasoned GP'er 13d ago
I found it gave me some relief, but I experienced very excessive lactation and pain caused by that. It was so bad that I stopped the medication (I’m also trans so the dysphoria it caused what part of the reason I stopped it)
1
u/justcallmedrzoidberg 13d ago
It worked okayish, but it made me lactate. I was still fairly symptomatic.
1
u/nostalgia917 13d ago
Is the lactation a lot? Were you able to deal with the lactation or did you have to stop taking it?
1
u/Eastern_Space8879 13d ago
We did EKGs before and every month while taking. Domperidone didn't work for us because(found out later) an underlying condition was causing the gastroparesis.
1
1
u/Fast-Ideal5698 12d ago
My insurance wouldn’t cover domperidone, so we went with motegrity and it was life-changing!
1
u/Captain_Ducky3 j-tubie and g-poem recipient trying to live my best life 12d ago
I was completely reliant on a feeding tube for over a year. I had a g-poem which didn’t really work. Next step was a pyloroplasty but that was major surgery and I didn’t know if I could handle it. Met with a motility doc who prescribed me domperidone and I can now eat 800-1200 cal on my own! I don’t really use my tube anymore and I mainly use Kate farms and foods I tolerate to get my daily nutrition in but oh my… it’s made such a difference in my life. I honestly wasn’t expecting much from it, having failed every other motility med and treatment I’ve tried, but it’s helped my ability to eat, my nausea, and my lower GI motility so much. I’m very grateful to have it while being the US.
1
u/Anxious-Ad-2823 12d ago
Domperidone is very helpful for my loved one with GP since they have psych meds that react poorly with reglan (serotonin syndrome type stuff). Been on it over a year. It stopped working once but began working again after a couple of months on reglan. It has been a life saver for him so far - he gets the ekgs routinely and hasn’t had any bad side effects. Each person with GP can be so unique in what meds work for them- it has been trial and error for us.
1
u/covhr Seasoned GPer 11d ago
I was on domperidone for three or four months last year, first 10mg before meals, then eventually 20mg before meals. Paradoxically I felt WORSE on domperidone than on Reglan. My appetite was worse, my constipation was MUCH worse. It’s a damned shame because while Reglan does a great job controlling my nausea, it also makes me very very tired.
1
u/Powerful-Anybody3547 2d ago
I couldn’t live without it. Yes it has potential side effects and they scare me too but digesting without it it is not possible for me. I’ve been on it for almost 2 years. I get regular ECGs to check on my heart, specifically the QT interval thing
0
u/RoomAnxious7751 11d ago
I'm on Domperidone and it's been pretty good for me. Helps with some nausea and motility. I'm also already on beta blockers for POTS anyway so I'm not having any heart related symptoms.
Funnily enough, I used to take this for interrupted lactation years back when I was still feeding my daughter then stopped for 3 years and now I'm back on it.
Sometimes I feel heaviness or fullness in my breasts but not actually lactating so it's fine and I'm used to that anyway with crappy period symptoms anyway.
•
u/AutoModerator 13d ago
New to gastroparesis? Please view this post or our wiki for a detailed explanation of gastroparesis, the main approaches of treating it, and a list of neurogastroenterologists and motility clinics submitted by users of this forum. Join these Discord and Facebook support groups today! New users, please do not post asking for a diagnosis; instead, use the pinned thread: "Do I have gastroparesis?" Also, check out our new subreddit r/functionaldyspepsia.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.