Anyone Here Been On Or Tried Domperidone?

[Poohbear]

I hope you all don't consider this off-topic.

This is more a question for those of you who battle with gastroparesis but for many of us that cause is most likely a result of the same problem that causes all our other autonomic dysfunction.

Anyhow, If any of you are on domperidone or have tried it would you mind sharing your experiences with it? I am to the point of getting set up to try it but my GI Dr's are nervous about it because they don't understand the autonomic dysfunction.

I am highly sensitive to meds and am a bit concerned because of the FDA reasons for not approving this med in the U.S. (being cardiac problems). I do recognize those concerns are around IV forms of the drug though.

Is this a med that should be treated like many of the others we try in that we should start out with smaller doses than the "typical" recommended?

What side effects have you had with the med?

I know you all aren't Dr's....I'm just looking for what your experiences have been with it.

Thanks!!

[Sunfish]

hi pooh -

if you do a search there has been a bit of discussion on domperidone (within other threads mostly). i know at least three of us on the board take it...perhaps more.

i have had zero side effects from the med and only a bit of "luck" with it, meaning i can keep in around 500 calories a day rather than 50. but i'm obviously a bit beyond the norm in terms of how bad my gastroparesis is; on all the meds (including the domp) my stomach emptying time was still calculated at 872 minutes. many though have a lot of luck with the med.

i started on the normal dose but i don't tend to have trouble with "normal" med doses these days if they're by mouth b/c i don't absorb them the best...thus i may actually get less than i'm taking. i.e. if i get meds by IV it's another story. then i am crazy sensitive.

and regarding why domperidone isn't approved in the US, it's not "just" b/c of side effects. statistically a lot less people have a lot less side effects taking domp than taking reglan. part of the issue is a "political" issue b/c of the off-label use of domp for breast-feeding. this is very controversial and thus there are some who want to keep the drug out for this reason. the most common side-effect with domp in fact is a bit of lactation.

hope this helps,

melissa

[Roselover]

Poohbear,

I'm on domperidone. It has been a miracle drug for me concerning nausea. I also eat much better - still careful with fiber, small meals etc. I was hospitalized three times for flare up with pain, nausea and no fluid intake before starting domperidone. I've had quite a few flare ups on domperidone and they were very handleable, I kept in fluid and made it through just fine with no hospital!

As for side effects - none - except as sunfish mentioned - just the smallest amount of lactation, but not enough to be any problem. No breast pain or anything.

And if you read the research carefully, the heart problems were in older people who already had heart issues and were given domperidone through IV and it was a very small number.

Melissa's right - the main reason it's not OK'd in the US is because it was being prescribed to help with lactation and it's the med is transferred through breast milk and it's unproved whether this is harmful or not. Because FDA couldn't controll this type of prescribing, they totally rejected it. You can read about this on the FDA website. I wrote them a letter expressing my need for this medication.

It's my life saving, miracle med for my GI issues - don't know what I'll do if/when the US really cracks down on importing drugs - which they are discussing in Congress. I'm writing my congressmen to encourage them to consider those of us who need this medication.

I will say, that it took a month or so for it to be fully effective and I do still have to be careful what and how I eat. But OH what a relief to be rid of the severe nausea that plagued me!!!!

I know not everyone has the same expereinces on meds, but this is mine on domperidone. I sure hope if you try it that you get some relief.

If you need to know how I order mine, PM me and I'll give you the details.

~Roselover

[JacobyD]

Poohbear,

I used Domperidone regularly when my motility was zero. It worked wonders for me and I had no side effects. No lactation either, thank goodness.

I had mine made for me at a local compounding pharmacy.

Good luck!

Dan

[Poohbear]

Thanks for the replies!!

I had thought that most of the reasons FDA hadn't approved this was political and I assumed it was largely because of the breast-feeding issue because it seems that's where the focus is on FDA's website. It's a shame isn't it?

I haven't found much on the specifics of the IV risks but felt that because people here had taken it and we hadn't heard horrible things that it must be relatively "safe". (especially since many of us are so sensitive to meds).

I think I will talk to my compounding pharmacist because he seems very good at what he does and he's been great at compounding a tiny dose of metoprolol that I can manage.

I still worry a little....you know how it is with trying a new med, and since I have mast cell activation syndrome it's a bit tricky but I think the main key is to start with teeny tiny doses.

[morgan617]

My son takes it with no problems, but my GI says he won't give it to me because of potential side effects.

It helps my son quite a lot. morgan

[Nina]

Hi

I take domperidone, I was diagnosed with gastroparesis not long after being diagnosed with POTS. Since being diagnosed with POTS I also became highly sensivtive to medication having seizures and requiring intubation after many medications. I lived in Boston for three years however I am from Australia and I am now back home. I did not respond well to regland so my mother sent me domperidone. For me it works extremely well and I have never had any problems. Although it is not used in the US it regularily used in many other countries. My gastroparesis seems to have good days and bad days so I use the medication when I need it. However in the begining I took it four times a day. Due to my sensitivities with medications I always take new medications in the presence of other people.

Hope this helps.

Nina

[DSM3KIDZ]

I took it for 10 weeks. The first 8 were good except for mised periods and lactation other than that everything seemed alright. Then i started getting real dizzy episodes and weaned off it to see if that was the cause.

My dizziness has lessened since so I'm not sure if it was the drug or not.

It worked the same as reglan for me so I'll just stick with that as needed.

God luck I know MANY have great results from it.

Dayna