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refractory GERD -- effective treatment?

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Posted 5/9/2013 8:20 PM (GMT 0)
Has anyone suffer from refractory GERD despite heavy PPI dosing? I've been doing some research and have read that response to surgery is often not good in these patients. Have also read some that the addition of Bacolfen has helped. Any thoughts or experience with this?
Posted 5/9/2013 9:47 PM (GMT 0)
I'd venture to say most people here are in the refractory GERD category.

It would be helpful to know what your symptoms are on/off PPI therapy. In my case, a PPI helped one symptom but did nothing for other symptoms which at this point I think were not reflux related. My case I think is one of hypersensitivity, which has remained after reflux surgery.

Posted 5/10/2013 12:50 AM (GMT 0)
I guess I am in good company then :) I've already gained a lot of insights from reading all of your stories.

My symptoms are pretty much the same on and off PPI's, including regurgitation, burping, throat burning, sour taste, persistent cough, and occasional heartburn. The meds helped a little bit, but now my symptoms seem to be worsening.

Since the meds weren't working, my GI doubted that I even had acid reflux and sent me for ph testing. ON the meds (30 mg Previcid twice a day) I refluxed 138 times during the day for a demeester score around 30. I'm trying to figure out what to do next. Push for surgery or keep trying meds. I feel like I've been doing the medicine roulette for too long already.
Posted 5/10/2013 10:22 AM (GMT 0)
I would agree, most members here probably have refactory gerd. I have typical symptoms off meds and atypical on them. I would be very careful taking Bacolfen, it can cause ticks and twitches. smhair
Posted 5/14/2013 4:26 AM (GMT 0)
I think it depends. I know if people are suffering from non acidic reflux, they won't be getting to much relief from meds, but could possibly receive benefits from a surgery. Get a PH- impedence study done with a multi channel probe.

I know for myself, the doctors are saying my reflux is due to my gastroparesis, so reflux could be a secondary problem in some people as a result of an underlining issue. Also, if someone has some kind of allergy or intolerance to a certain food. This could cause somekind of inflammation inside you Gi tract.
Posted 5/14/2013 4:27 AM (GMT 0)
baclofen for me doesn't do much for myself, but in terms on non acidic or secondary options after PPI's, it seems to be the go to drug.
Posted 5/14/2013 8:20 AM (GMT 0)
What is refractory GERD?

I get heartburn on and off PPIs, currently on max dose of Nexium, Carafate and Domperidone but still get heartburn frequently.

I haven't dared come off PPIs in months, last time I came off for a test it was sooo painful, like 10x worse than it had ever been before so I dare not stop them now.
Posted 5/17/2013 5:06 AM (GMT 0)
heres a good link for refractory gerd!

http://www.uptodate.com/contents/approach-to-refractory-gastroesophageal-reflux-disease-in-adults
Posted 5/28/2013 2:05 AM (GMT 0)
It seems like for refractory Gerd, some option your doctor has is to switch to a different PPI, double the dose of the PPI, do a trial of baclofen, and put you on some kind of neuropathic pain medication.
Posted 5/28/2013 3:08 PM (GMT 0)
I'm meeting with my GI next week to discuss other medication and surgery options. I'm too young to be having all of these problems! I consider myself a very healthy person, otherwise, so it is very frustrating.
Posted 5/28/2013 9:26 PM (GMT 0)
I wish you the best! I'am also young and it is frustrating. Just keep fighting.
Posted 5/28/2013 9:46 PM (GMT 0)
Another young un here too, still got symptoms on max ppi.

I was diagnosed with a rolling hernia today
Posted 5/28/2013 11:10 PM (GMT 0)
http://www.youtube.com/watch?v=vq9MJ3SaNVM

^--- hiatus hernia

That looks pretty bad...Hopefully getting that fixed will be the ticket outta this mess.
I had a large hiatal hernia myself, had repaired, but apparently that wasn't my problem. I'm not sure if your taking this as great news or bad news, but it definitely looks like it's the reason why nothings working for you haha.
Posted 6/7/2013 2:27 PM (GMT 0)
I saw my doc yesterday to review everything and he referred me to a surgeon. He said with the way my ph study was so decisively positive, while on meds, I'm probably going to end up having to have surgery. He felt bad referring me to the surgeon, being young and otherwise healthy. I feel like a bad student. My dad has the same problem and now has Barretts, so I think this is largely bad genetics.
Posted 6/7/2013 3:19 PM (GMT 0)
I believe I have bad genetics also, sucks being doomed from birth. sad
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