Are you STILL on PPI's post-Nissen?

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efit
Regular Member


Date Joined May 2011
Total Posts : 127
   Posted 12/10/2011 10:07 PM (GMT -6)   
Hi guys,

I just read a very disconcerting post regarding people with LPR STILL needing PPI's for LIFE!!!...even post-Nissen. Hold up...I thought that was one of the benefits of the Nissen is no more bone density depleting PPI's. I've held onto the hope of the Nissen in my back pocket throughout the past 7 months. On my bad days, I think "well if this gets worse, I'll just have the Nissen" but from what I read, it sounds as though it is not that successful for those with LPR.
I have traditional heartburn like right at my adam's apple area AND LPR. I get the LPR when the regular heartburn is at its worst. I clear my throat, my throat gets a bit sore and I cough up some mucus.
Say it aint so...
How many of you guys who've had the Nissen for LPR symptoms are still taking your PPI's? I'm very curious.

Thanks,
Liz

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 12/10/2011 10:47 PM (GMT -6)   
Hi Liz,
LPR is a unique form of reflux in that it can take very little reflux to create very big problems.  Atypical symptoms are more difficult to cure via Nissen surgery, and the success rates are not as high as "typical" GERD.
 
Here is a quote from a study:

Performing a Nissen fundoplication is the primary surgical option pursued if medical management does not alleviate LPR in patients.  Entailing the encirclement of the esophagus with the gastric fundus, fundoplication carries a 90% ten-year success rate in those experiencing GERD.  Available literature suggests a Nissen fundoplication may improve LPR-related signs and symptoms in 73-86%, although it should be noted that there appears to be a poorer response to surgery in those who have failed four months of medical therapy--and yet, surgery is an option offered to those who do not exhibit significant improvement under such conservative management.

 As you can see, the success rate is lower for LPR patients. That said, it can be a good option for improving symptoms in some patients. 
 
I personally don't think that anyone who is controlling their symptoms well with PPIs should consider the surgery for LPR.  The likelihood that you will never need PPIs is definitely not a guarantee.
 
My most problematic LPR symptoms was severe asthma that could not be controlled, even with high doses of steroids.  I was even hospitalized when a bout of gastritis increased my reflux.
 
I really didn't have a choice.  I had to have the surgery.  I wasn't sure whether or not it would cure my lungs, but nothing else was working, and I had to at least try it.  That way, if it didn't do the trick, we could rule reflux out as the cause.
 
I had been on 40mg of Protonix before breakfast and dinner, as well as 300mg of Zantac to augment acid suppression.  Even with all of that medication, my lungs continued to be dangerously unhealthy.
 
I had the surgery in February 2009 and it took two and a half months, but my lungs responded extremely well.
 
My PCP and asthma docs both want me to continue on PPIs (just 40mg before bed) simply because LPR patients are hypersensitive to any reflux at all.  The Nissen surgery does not ensure that absolutely no reflux will ever escape your stomach.  It improves the likelihood, but in order to be absolutely sure, the wrap would have to be so tight that food wouldn't be able to go through. 
 
People with typical GERD aren't sensitive to "normal" amounts of reflux (all people get some reflux), so when the loose wrap allows a little reflux, it doesn't bother them.  Those of us with LPR are far more sensitive, and that's why the success rate is lower.
 
I also continue to keep the head of my bed elevated.  I do these things to help ensure that my lungs will remain healthy.
 
For me, the Nissen surgery was literally a lifesaver. 
I am thankful I had it, and would have a redo happily.  I do not ever want to go back to the condition I was in before the surgery.
 
I wish you luck in finding an answer to your unique issues.
It's not fun to have GERD, and LPR is in many ways much more frustrating, as there is not a clearcut fix.
Hang in there...we just have to make the best of whatever situation we're in.
Best wishes,
Denise

LocalGuy23
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 12/11/2011 3:39 AM (GMT -6)   
Efit,

I also believe I have LPR.....and for me PPIs did not help.

This is why I am considering surgery....Nissen or the LINX. But LPR is something I definitely don't want to live with......and hope surgery will help alleviate some of the symptoms.

LocalGuy23
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 12/11/2011 3:39 AM (GMT -6)   
Efit,

I also believe I have LPR.....and for me PPIs did not help.

This is why I am considering surgery....Nissen or the LINX. But LPR is something I definitely don't want to live with......and hope surgery will help alleviate some of the symptoms.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 12/11/2011 10:23 AM (GMT -6)   
Maximus,
A Nissen surgery is considered a viable option to help people just like you.  Just be sure that you find a highly qualified, highly experienced NISSEN surgeon to do your procedure.
 
Because of the issues I discussed in my post, it took my GI doc a long time before he recommended surgery as an option.  PPIs didn't do it for me, obviously.  My lung condition was "life threatening" according to my PCP and asthma doc.  I had no choice.
 
That said, while the surgery isn't a perfect fix, it did what I was hoping it would...it cleared up my very sick lungs.
 
Good luck with your quest.
Denise 

efit
Regular Member


Date Joined May 2011
Total Posts : 127
   Posted 12/11/2011 2:42 PM (GMT -6)   
Thanks for the replies Denise and maximus.

For now, Prevacid is giving me decent relief as I would say it has taken away 90% of my symptoms. The first month I was on it, I had about 50% relief, the second month, about 80% relief, and last month, I only had 3 bad days and my pain level never made it past a 2/10 so I suppose that is acceptable.

Denise,
You mentioned you were on PPI's for 20 years before your lung issues started. Were they working pretty well throughout that period? Did you suffer any long-term bone issues due to taking them for so long? Studies seem a bit vague and inconclusive on the risk of decreased bone density from PPI's.

Thanks,
Liz

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 12/11/2011 11:19 PM (GMT -6)   
Hi Liz,
The PPIs did work well for quite a while.  During probably the 6 years before my surgery, my reflux gradually started causing problems for my lungs. Actually, in the beginning my reflux was controlled by 20mg Prilosec before dinner.  Things just gradually deteriorated...my guess is that as my hiatus hernia got worse, my reflux increased.
 
I can say that I did get breakthrough heartburn even when I was taking 40mg Protonix before breakfast and before dinner.  At its worst, I was on 300mg Ranitidine in addition to the PPIs before bed.
 
Even with all that, my lungs were deteriorating.  I do have severe allergies, so the symptoms of allergy and LPR kind of blend together, making it difficult to determine which is the culprit.
 
You asked about bone density.  I have an even greater risk of bone problems because in addition to the PPI's I have taken steroids.  My steroid load was very high before my surgery.  So here I was taking 80mg of PPI as well as steroids, which list bone density problems as a side effect.  Add menopause into the mix, and I'm at high risk.
 
With all that, I think I've done pretty well.  My density has been fine until two years ago.  At that point (age 58) I have been diagnosed with osteopenia.  This year the bone density was very stable, and didn't decline any further. 
 
During the first probably 10 years of taking the PPIs and steroids, I walked at least 2-3 miles a day probably 5-6 days a week.  I don't think you can overemphasize the importance of taking Vitamin D, and Calcium, as well as weight bearing exercise, to help counteract the effects of the PPIs.
 
Sometimes our health issues really don't leave us many choices regarding medications we have to take.  Our quality of life depends on them.
 
Good luck!  I hope your meds continue to significantly improve your symptoms.  It sound hopeful that your symptoms have continued to decrease with continued PPI usage.
 
Best wishes!
Denise
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