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Well, I have been taking the domperidone 10mg four times a day for about 2 weeks. So far, I have not had any trouble tolerating it. I do think it may be working a little better than the reglan. I know it's known to have some side effects, but ALL meds do. I have not had any though. I do have to order it from Canada, as it is not available here in the US, but I didn't have any problem getting it. My gastro doctor gave me a prescription for it and it was honored by the Candadian pharmacy. My sclero specialist at Johns Hopkins has told me she obtains it for her patients too.

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Hi Barbara,

 

I'm very glad you are doing well with the domperidone and hope it continues to work well for you.

 

I just need to point out, for the record and for curious bystanders, that domperidone is banned in the U.S. by the FDA due to concerns about fatalities related to it; fatalities of course being a rather severe side effect. So, people should consult their scleroderma expert about this (as you have done).

 

Treatments for Dysmotility

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). 2004.

 

That said, of course, many of us take many medications that can be fatal -- even regular over the counter aspirin is occasionally deadly, even in normal doses. But that is not to undermine the importance of always trying to find the best medication for our condition with the least side effects, of course. Another thing to consider is that when taking prohibited medications, there would likely be no legal recourse available, in event of the worst case scenario.

 

Thank you for listening to this drug safety announcement from the nonprofit International Scleroderma Network.

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I've also just started on Domperidone (prescribed by the gastro). Have been taking 10mg up to 3x a day for just over a week.I have not noticed much effect so far , possibly a bit less bloating, but have not had any side effects either - in fact the information insert that comes in the drug packet listed relatively few side effects compared to other things I have taken/take! It is an approved drug here in the UK.

Lizzie

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Yes, Lizzie, that's a great point. Domperidone is legal in many countries, just not in the U.S., which is why there are discussions about legalities in the U.S. but it's a "normal" drug for forum members in other countries.

 

Doubtless, there will always be discrepancies in various drug approvals by countries but this particular one is perhaps the most glaring in regard to scleroderma, so in discussions we try to point out the legal aspects of it, as well.

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