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Domperidone (motillium)


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#1 barefut

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Posted 16 April 2007 - 03:42 PM

My gastro doctor prescribed this for me on my consultation visit. So, before he even had any test results from anything back, he is wanting me to just start on it right away. He said it should help with my lower abdominal cramping but from what I read, this drug is prescribed for motility problems. I do have esophageal motility problems but it is yet to be determined regarding any stomach/intestinal motility problems.

I live in the US and it is not FDA approved here due to risk of heart complications. He gave me instructions on how to get it through the mail from Canada. Is this legal?

Is anyone else taking this? How much does it cost after insurance?

I'm sure there is something else he could have tried before presribing this and I think he could have/should have at least waited until my upper GI study, x-rays, endoscopy, and colonoscopy results were in.

And, if he's prescribing this soley to relieve my lower abdominal cramps, I think we could have tried something else first. In fact, I had been taking an over the counter IBS med for awhile that helped a lot.

I am going to go back on that over the counter med instead of filling this Rx from Canada.

Thanks in advance for any answers to my questions and/or your comments.

Barefut

#2 Heidi

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Posted 16 April 2007 - 04:11 PM

Hi Barefut,

I think you are right to be cautious of this med. Here is what I found out about it on our Sclero A to Z website:

Domperidone Warning FDA Alert: Detention without Physical Examination of Domperidone, brands names Motilium, Euciton, Cilroton, Praxis, Seronex, Emiken. Domperidone is not approved for any use in the U.S. There have been several published reports and case studies of cardiac arrhythmias, cardiac arrest and sudden death in patients receiving an intravenous form of domperidone. U.S. Food and Drug Administration (FDA). Domperidone Should Not Be Considered a No-Risk Alternative to Cisapride in the Treatment of Gastrointestinal Motility Disorders. Several cases of QT prolongation and ventricular tachyarrhythmia have been reported with domperidone, a gastrokinetic and antiemetic agent available worldwide but still under investigation in the United States. American Heart Association. Circulation 2000:102:1883.

Warm wishes,
Heidi



#3 kelowna52

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Posted 16 April 2007 - 05:46 PM

Hi Barefoot, I am Canadian, but live in the US now. I was on Domperidone a couple of years ago and I had to go through the mail as well. My Insurance here would not pay any of the cost, it was $125.00 per month. I only took it for a few month's. I felt horrible while taking it. It made all of my symptoms worse. I tried Reglan, which is basically the same thing, but you can get it here. I couldn't take it either. I seem to suffer with all of the side affects that are listed with these meds. Well, good luck to you.

Jackie S.

#4 jlf

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Posted 16 April 2007 - 06:15 PM

Hi Barefut,

I take Domperidone - I was first put on Reglan which has very bad side effects. So far, the domeridone has worked - stopped my endless nausea (I have gastroparesis) and has helped with digestion. I had to sign a release and acknowledgment that it is not FDA approved. Domperidone has been used in many countries successfully for 17 years for gastroparesis. My gastro doctor faxed the perscription to a Canadian drugs pharmacy, I pay, they send - it's been really easy and hassle free. It is cheap - your insurance won't cover it because of not being FDA approved. If I were to loose my insurance, I would get all my perscriptions from them. You can check them out at a link which I can send you by PM if you are interested.

Hope this has helped,

JLF

#5 barefut

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Posted 16 April 2007 - 07:45 PM

jlf,

How cheap is cheap? Jackie says it cost her $125.00 That's not cheap to me.

I'm not sure I'm gonna like my gastro doctor and/or he's not gonna like me. I've learned to not just "do as I'm told" by doctors, but to investigate and get second and third opinions. He seems like a dictator. I'll bet you if I go back to him with my reasons I don't want to take it, he'll scold me for researching the drug and poo-poo the studies.

I had uncontrollable jaw jerks taking Reglan so that's not an option. I just don't think I NEED to be on anything right now/yet. My problems aren't that bad.

Thanks for your replies. I welcome more!

Barefut

#6 Patsy Segall

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Posted 16 April 2007 - 08:32 PM

Hi everyone,
I logged in to the forum to post a query about Motilium (domperidone) and found this discussion had just started. My general practitioner (not my gastro, whom I should consult I guess) has prescribed it because he thought it might help the problems I have been having with gastroparesis. I was relieved to read JLF's post about its good effects for her. In Australia there is no problem prescribing this drug, it has been used for many years and is not expensive. My doctor said it had fewer side effects than Metaclopramide, which I had been taking for the nausea caused by the gastroparesis (self medication - I had some on hand left over from when I was on Cytoxan IV last year). I note that the study reporting adverse affects was for IV domperidone, not oral.

My question is about dosage. I am already on 40mg Nexium and 300mg Zantac for GI problems and I'm reluctant to add another daily drug, 3 times a day. But it seems to be for prevention, rather than relief once an attack starts, and so it may be that that's the only way to use it, since I can't predict. Reading about it, it seems it may help with the reflux as well.

I'd be interested in any experiences with this drug. I'm happy with private replies.
Best wishes,
Patsy

#7 kiwimum03

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Posted 17 April 2007 - 12:30 AM

My general practitioner gave me Motilium and I take 1-3 times a day to aide my digestion and stop my regurgitation, she thinks I may have Gastroparesis.
I did get a bit of breast milk leakage from it (prolactin is one of the side effects) and for a while I had salt cravings, so my electrolytes were checked as it can throw the balance out which can lead to tachycardia. But my electrolytes were fine and my salt cravings went (but I did have a heart rythym done and it was fine)

Here in NZ, it is easy to get and mine are on Government Subsidy, so I don't pay much at all for them.

She doesn't want me on them all the time, because there can be some side effects and risks, and I am still waiting to see the GI doctor for all my problems, so she kind of gave them to me, to help me until I get to see the GI doctor.

Most of the time, I take one before dinner, and not worry about breakfast and lunchtime, and that one tablet helps my regurgitation. (and stops me leaking breastmilk!)

take care,
Irene

#8 Sheryl

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Posted 17 April 2007 - 01:27 AM

Domperidone was to be my last resort for help. My doctor wanted me on it but said I could try Colestid. It has been working for the last 2 years so I haven't needed to switch. My doctor has a Canadian and American License so he can prescribe drugs from both countries. So to answer your question. If your doctor can write a script he is suppose to have a Canadian License. But, I believe now that I think on it. He can write a script without a license but then you may have to make an apointment with a Canadian doctor for confirmation before a drugest is supposed to fill it. Anyway, Colestid has helped much more than the other things I have tried in the past. Read up on that one and see if you think it might work for you. I also take the Nexium and Reglan 4 times daily for esophagus problems. Also other prescribed medications.
Have you had your thyroid checked. The starting of my thyroid problems was horseness and voice pitch changes. My voice went really deep for awhile. Just a thought. Sheryl
Strength and Warmth,
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#9 susie54

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Posted 17 April 2007 - 01:51 AM

Hi Barefut,

I have been successfully taking Motilium for two years with no side effects at all. It has really helped with nausea and lower GI problems such as cramping, slow motility, and so on. I went on this drug after much thought but was having times when the stomach didn't work at all. I tried to go off of it several times but had problems again. So for me it is a real help. I would not think twice about questioning your gastro doctor about the necessity of taking the drug.
I order from New Zealand and it cost 20.00 for 100 tablets . At two a day that last about a month. Not bad. If you need the order site , I can email it to you. Susie54

#10 jlf

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Posted 17 April 2007 - 04:36 AM

Dear All,

It cost about $20 a month. Concerned as you are, I questioned the legal aspect of it - but did find out that with a perscription you could get it. If you go to canadadrugs.com they have a toll free number - the folks there are really helpful - I talked to them before buying. According to my gastro Reglan crosses the blood brain barrier and can cause tardive dyskenesis (sp?) which can go into just plain old phycosis, Domperidone does not cross the blood brain barrier. It is a choice every one has to make one their own but I have been please with the medication and it has helped.

Have a great day,
JLF

#11 kelowna52

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Posted 17 April 2007 - 05:02 AM

Hello again, I find this very interresting. My insurance would not pay for the Domperidone, but it sounds like everyone here, were either getting it free or paid very little for it. My rheumatologist, in L.A. put me on it, and I didn't have to go to a doctor. in Canada. I got it through a Pharmacy in Montreal. I guess it helps some people and that's great, I'm just curious why I had to pay so much for this med.

Jackie S.

#12 susie54

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Posted 17 April 2007 - 06:48 AM

Jackie,

I bet you paid so much because you went through a pharmacy. Maybe you should order directly. Susie54

#13 kelowna52

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Posted 17 April 2007 - 10:58 AM

I went through my rheumatologist to get the med. I assumed I had to go through him.

Jackie S.

#14 Shelley Ensz

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Posted 17 April 2007 - 11:05 AM

Just in case any new people to this thread have missed previous warnings, we do not recommend or endorse motilium for any use whatsoever. It can be confiscated at the border when trying to import it into the U.S., even if ordered through a pharmacy, since it can cause sudden death and other, much safer, medications are available.

Domperidone Warning FDA Alert: Detention without Physical Examination of Domperidone, brands names Motilium, Euciton, Cilroton, Praxis, Seronex, Emiken. Domperidone is not approved for any use in the U.S. There have been several published reports and case studies of cardiac arrhythmias, cardiac arrest and sudden death in patients receiving an intravenous form of domperidone. U.S. Food and Drug Administration (FDA). Domperidone Should Not Be Considered a No-Risk Alternative to Cisapride in the Treatment of Gastrointestinal Motility Disorders. Several cases of QT prolongation and ventricular tachyarrhythmia have been reported with domperidone, a gastrokinetic and antiemetic agent available worldwide but still under investigation in the United States. American Heart Association. Circulation 2000:102:1883.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#15 bowbec

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Posted 20 November 2013 - 04:45 PM

Wow, Shelley, that's scary. My dr just prescribed it for me. I'm in Tennessee and it is a compound prescription. It will be $60 for 90 pills. Picking it up tomorrow... I think...
Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.