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Domperidone


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#1 bowbec

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Posted 20 November 2013 - 04:27 PM

My gastro doctor just told me my esophagus was paralyzed from the scleroderma. She prescribed a compound drug, domperidone, and Dexilant. Has any one taken these drugs? And if so, did they work. My reflux is so bad I have a chronic cough and I keep tearing intercostal muscles. Very painful! Any advice at all?
Thanks!
Becky


Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.

#2 judyt

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Posted 21 November 2013 - 12:46 AM

Hi Becky,

 

You ask about Domperidone.   It has a fraught history in the US I know but I have been taking it for several years with no ill effects and in fact find that if I miss it for a few days my vomiting and pain symptoms return.

 

Judyt



#3 Joelf

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Posted 21 November 2013 - 12:51 AM

Hi Becky,

 

How lovely to hear from you again!

 

I can't advise you from my own experience, as I've never taken the two medications you mention. I've included a link to our medical page on Treatment and Management of Dysmotility which includes a warning about Domperidone. Just in case anyone may have missed previous warnings, we do not recommend or endorse motilium for any use whatsoever and I've included a link to our previous thread about it.

 

I'm sorry to hear that you're suffering such awful reflux and I do hope you'll soon get some relief from it.

 

Kind regards, 


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#4 inkedup

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Posted 21 November 2013 - 11:23 AM

Hmmmmmmm.......feeling a bit anxious now, as I have just started taking this due to my chronic reflux.



#5 Jeannie McClelland

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Posted 23 November 2013 - 12:30 PM

Hi all,
I've been taking domperidone (Motillium) for 6 years now, albeit at a high dosage with no ill effects. It does help me quite considerably. I started it at the recommendation of my GI doctor, who specializes in the effects on the GI tract of autoimmune diseases, especially scleroderma. Because of the controversy here in the USA, he has me have an EKG once a year.

When you think of the dangers to the lungs and of the possibility of Barrett's caused by uncontrolled reflux, I'd come down in favor of taking domperidone. It's sold all over the world, in countries that have as stringent licensing regulations as here. I think the furore is unwarranted.

Jeannie


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#6 miocean

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Posted 23 November 2013 - 03:53 PM

Oh my goodness, Jeannie, it is so good to see you post! I have wondered what you have been up to and how you are doing. 

 

I see my GI doctor next week and will be interested in hearing what she has to say about my reflux, slow motility in my esophagus and small intestine bacteria overgrowth. 

 

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#7 judyt

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Posted 23 November 2013 - 04:40 PM

Hi,

 

Nice to hear from you Jeannie, was thinking of you when I posted my response on this thread.   You have had the courage to say what I was thinking!!

 

My Gastro told me to continue with Domperidone since it is doing it's job and the alternative is not nice.

 

Judyt



#8 Jeannie McClelland

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Posted 24 November 2013 - 07:08 AM

I'm doing really well, confounding the doctors with my extraordinary recovery from that horrible illness last year, thanks. I think of you all quite often. Miocean, my SIBO was treated with week on/week off tetracycline. It took a while but eventually it cleared up.

Re: domperidone. I'd suggest folks google "domperidone clinical studies" and read a number of them. I suspect you might find the published data more reassuring than alarming. Of course, any decision about any medication should be between you and your doctor and thought given to the good old risk/benefit analysis.

The problem for us scleroderma patients is there just isn't any risk free option. Think of the path of treatment most of us have followed: antacids (how well did they work for you?), proton-pump inhibitors (google for their risks, they have them; I have been on a high dose of those for about 9 or 10 years), a motility drug (google pro-kinetic + gastrointestinal motility for their risks and prescribing limitations), and fundoplication (all surgery carries risk).

One of the ways I make my decisions is to consider what my end goal is. How likely is the recommended treatment to achieve it and at what cost. I'm not just talking risks, for many of us the $$$'s are a factor as well. If I start a medication, will I be able to continue taking it long term. What is the most likely outcome if I choose not to accept a particular treatment and is that a verifiable outcome or a "we think..." outcome.

Decisions, decisions~ I'm facing a big one right now. Should I continue to color my hair or give in and let it go gray?

Jeannie
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#9 judyt

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Posted 24 November 2013 - 12:30 PM

Hi Jeannie,

 

I can offer an opinion only on the hair colour question,  we redheads don't go grey as such we just get more and more blonde highlights!!!

 

Having grown up as a redhead in a family of redheads, my mind reminds me, when I look in the mirror, of my father's words - don't ever try to change the colour of your hair.

 

A discussion on Scleroderma Australia last week brought up this question again and the opinion seemed to me to say DON'T.    We put enough chemicals into ourselves just staying alive and we don't need more.

 

Anyway, Jeannie that's what I think and it is what I do (or don't do).

 

Well, I can and have offered an opinion about Motilium but you have put it much more eloquently than I could.

 

Stay well,

Love

 

Judyt



#10 Joelf

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Posted 24 November 2013 - 10:47 PM

Hi Jeannie,

 

It's so lovely to hear from you again and even better that you're doing really well and have had such a remarkable recovery! :emoticons-yes: 

 

To colour or not to colour; I agree, a very hard decision!!  Actually, although it is a bit of a palava and also quite expensive, I wouldn't contemplate not colouring my hair; long grey curls would not be very becoming and would probably put years on me!! ;)   :lol:

 

Best wishes,


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#11 Shelley Ensz

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Posted 26 November 2013 - 08:06 PM

Hi Jeannie,

 

My goodness gracious, what an absolute day brightener to see you back again!  You simply have no idea how much we all miss you, and most especially me!!

 

Well, let's hear your cost/benefit analysis for coloring hair.  I would usually vote for most redheads to keep on coloring, if it is reasonable for them, because I think you'd also possibly end up coloring the grey to get a shade that would be flattering to your skin tone.  Plus you might have to redo your entire wardrobe with a color change.  Of course, that isn't necessarily all bad if you are in the mood for shopping. :yes:

 

:emoticons-group-hug:


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#12 Amanda Thorpe

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Posted 27 November 2013 - 12:29 PM

Hello Jeannie

 

What a wonderful surprise to come and find there's a new post on the forums from you! I am awfully glad you're still alive by the way, as I am sure you are! What a fright you gave all of us and let me tell you chickie, you have the constitution of an ox to have come through all of that.

 

Let the colours go and your real beauty will show! Ma used to have her hair coloured regularly but stopped months ago allowing her grey to come through and she looks like she has lots of different shades of colours now, even I didn't realise she'd stopped colouring her hair. When you get to a certain point on the age scale natural looks better by far.

 

Your advice about medication is, as always, sound and you're correct saying all medication has side effects, something we often forget. Medications are toxic chemicals harnessed in such a way that we can use them safely and enjoy the benefits of them but they can bring risk with them.

 

Jeannie I do hope we hear more from you and take care.

 

 

Hello Inkedup

 

I have tried domperidone and did not find it particularly effective but I can echo the fact that it is widely used, unfortunately you only hear about the problem cases not the success stories so don't sweat it. Chances are you will have no problems with domperidone and a lot of benefit. If it does not work for you go back to your doctor and try another motility drug as there are others out there.

 

Take care and let us know how you get on.


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#13 Amanda Thorpe

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Posted 27 November 2013 - 12:34 PM

Sorry bowbec, I forgot to say the same thing to you! Try the domperidone and if it doesn't work or you have side effects make sure you go back to your doctor and try another motility drug. Please let us know how you get on and take care.


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#14 LouiseH

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Posted 29 December 2013 - 10:07 AM

Just thought I'd reply to this as I have been on Domperidone for a few years now and I noticed a big improvement to my throat & stomach.   My GP did have some concerns about the side effects of the tablet so he took me off it for a few months.  

 

He tried me on a new one but after a few weeks I started to get my bad symptoms back so therefore he put me back on Domperidone and I've not had any side effects from it yet.

Hope this helps.