Domperidone/ Oesophageal Dismotility

[Lichfield]

Hello Everyone,

Had anyone taken Domperidone, if so has it helped? It’s just been prescribed to me and would be interested to hear from anyone who has taken it.

I have esophageal dismotility, caused from Scleroderma.

Had awful trouble with my oesophagus for a long time. I do all the things you are supposed to do eat small meals, don’t eat late, propped up in bed etc.

My food lies in my oesophagus for hours after eating, I’m sick, have horrendous acid reflux, and aspiration which is a little better of late.

I take PPi’s Pantoprazole 80mg per day along with Famotidine and Gaviscon Advance.

I have recently been diagnosed Limited Scleroderma, Interstitial Lung Disease, and Pulmonary Hypertension

Would be grateful for your reply’s please,

Thank you, Best wishes

[EOLHPC]

Hello Lichfield...had hesitated to reply cause my scleroderma-like conditions in GI tract (mouth to exit), skin & circulation/Neuro-system are secondary to early onset systemic lupus, rather than officially due to scleroderma of some kind itself. But I’m on NHS rheumatology scleroderma protocol treatment for severe Raynauds (severe ischemia reperfusion injury) and all my very early onset GI tract issues have been progressively debilitating + manifesting in ways they tend to with scleroderma, so...

For what it’s worth:

Am 67 and my AID/CTD conditions are very early onset, including those along my GI tract. When I was in my early 50s, my upper GI probs flared acutely & were investigated. The diagnoses were: oral lichen planus, chronic oesophagitis (pre Barretts) with gastric metaplasia but no apparent reflux, chronic gastritis & slow stomach emptying (gastroparesis) , duodenitis.

At that point my gastro prescribed long term daily domperidone + the PPI oesomeprazole. I was on these for 6 years, while revisiting/tweaking the Low FODMAP exclusion diet that’d helped me manage for years. The PPI was not easy to tolerate (it gave me overflow diarrhea) & although the domperidone helped a lot to increase my rate of stomach emptying, I did still need to eat a fairly strict exclusion diet ‘little & often’. As the years passed, I managed to wean myself off both domperidone & my PPI...but I still had to manage my food intake very cautiously...and gastritis-nausea remained a persistant prob, just at a slightly reduced severity.

Eventually, immunology put me on long term daily antibiotics (coamoxiclav) for my Primary Immunodeficiency Disease...and HURRAH: right away my chronic nausea reduced to almost NIL...proving, my consultants say, that my chronic gastritis was mainly due to SIBO (small intestinal bacterial overflow caused by my severe mouth to exit slow transit dysmotility)

Hope something in there can be useful 🍀❤️ Coco

[Lichfield in reply to EOLHPC]

Barnckown

Thank you for your response, very much appreciated.

I have an appointment with my Gastro Consultant next week, hopefully he will be able to come up with some answers.

Wishing you all the best, take care, and thank you again.

[EOLHPC in reply to Lichfield]

You’re v welcome. Hope your appt is constructive. Take care 💞💞💞💞

[Hidden in reply to Lichfield]

Hi. Yes I have Overlap of Sjögren’s and SSc and am taking Donperidome for severe gastroparesis. I think it’s actually really helping but hard to be sure as I’m on lots of other meds too. I only take one a day and as I eat only small amounts and mainly stick to a prescribed fortified liquid gastroparesis diet. But I’ve noticed since starting it that medications are being better absorbed. It was actually the practice pharmacist who prescribed it when I became apprehensive about Metoclopramide. The main thing is to remember to take it an hour before meals for effectiveness. X

[Lichfield in reply to Hidden]

282523 Thank you very much for your advise it’s so appreciated.

I will try them and see how I feel.

Hopefully it will help.

Best wishes to you, take care.

[Poppy221]

I've got exactly what you've got but I am two years further on from diagnosis and am on all the treatments - and doing really well. If you search for me as a member, and then pick the replies tab and skim down to a thread on pulmonary hypertension you'll find my earlier answers on the subject - it goes on a bit so I didn't feel like re-typing. I am doing really well, but still have to measure out where I use my energy, so do my best to be efficient with my time. Hope what is there is helpful to you.

Regarding domperidone - yup, helped enormously. I did have food fermenting in my stomach followed by vomiting on random days, stopped completely. Still a little acid reflux if I am not careful, but taking a PPI as well has almost completely stopped that. Acid reflux is maybe a couple of times a month.

[Lichfield in reply to Poppy221]

Hi Poppy221,

Thank you very much for your reply.

It’s really good to hear that your PAH is responding well to medication.

I had a heart scan and they said I had PAH only a few weeks ago and have been referred to a specialist PAH hospital. As yet, I haven’t had a heart catheterisation but I presume they will do one at the specialist hospital.

I’m on no medication for PAH at the moment.

Tonight with my evening meal I took my first domperidone and for the first time in a long time I haven’t been sick. So, so far my oesophagus and stomach are also feeling much better than they usually do after eating.

Thank you again for your reply,

Best wishes, take care.

[Poppy221]

Yay on the good result.

Couple of other thoughts - my ramp in my bed is at least 20 degrees - so more than the online recommendations. I have to wedge an old feather pillow just beyond my bottom to stop myself sliding down the bed.

I try to eat no later than 3 hours before going to bed. Taking pills when your oesophagus is inflamed can be difficult. I take pills in thick yoghurt. There are also goos/jellies in a tube for taking pills that can be found online.

I thought domperidone was to be taken half an hour before a meal.....

Oh and final thought - when everything is inflamed in your gullet, avoiding spicy foods and anything acid - pickles, oranges, tomato, sometimes even apples - wait for it to settle down and then give at least an extra week before trying to eat a small bit of something acid. I still can't eat ginger and I used to love to chew on crystallised ginger.

Going onto medications can take a while - they need to be sure which medication is causing side effects, so you get stable on one - some medications you start on a low dose and work up on a weekly, or two weekly cycle - and then two weeks after you reach maximum dose on that medication, you can start the next one.

[Poppy221]

Further thought - there are a lot of needles and catheters in your future..... a radiologist taught me to relax and how much less it then hurts - so it really does feel "just a little scratch". Ask whoever is about to stick a needle in you for a moment so you can relax. I usually do about three deep breaths trying to relax my arm ever more on each one and then nod, and try to stay relaxed as the needle goes in. It really is just a scratch. With the heart catheter, they may well put local anaesthetic in first. You need to lie very still for the heart catheter - other than breathing - and they may even ask you to hold your breath for a moment. You will have a catheter roaming around in your blood vessels, so it is good if it doesn't bang into anything it shouldn't. I had no problems at all with the procedure. Odd feeling of something faintly peculiar from time to time, but that was it.

[Lichfield in reply to Poppy221]

Thank you for all your advice and time very much appreciated.I’ve had acid reflux and occasionally aspiration since 2013 been doing and agree on all you’ve mentioned it all helps.

Thank you also for letting me know your experience on having your heart catheter. Not looking forward to it but it has to be done.

Interestingly you thought domperidone should be taken half hour before food. My gastro surgeon said a hour before, I tried that last night and I was good. Tonight 45 minutes before and was still good. I suppose it’s on each person what suits them individually. You seem to hear different reviews how long before food you should take it.

Take care, and best wishes to you.