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Leaving LPR untreated

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Posted 6/12/2011 12:04 AM (GMT 0)
I am trying to understand the consequences, timeline, progression of leaving the LPR untreated for a longish periods of time ..

My current symptoms are:
- Hoarse throat that sometimes gets worse, sometimes better
- Sometimes swallowing is uncomfortable
- Voice becomes fatigued by the end of the day

Various things I am doing currently:
- Gargles as and when I can (5-10 times a day)
- aloe vera juice after meals followed by Gaviscon Advance
- DGL sometimes before the meals
- Liquid probiotics sometimes during the day
- Gabapentin 50mg/night before I go to bed (for the last 3 weeks)
- Gaviscon Advance before I go to bed
- I have acupuncture treatment also going
- Strict diet (gluten/dairy free, protein rich, alkaline-oriented)

However, the symptoms seem to come and go .. never fully go away completely.

My question is:
Since I am not taking the powerful acid reducers (PPIs) - will this eventually be able to control my LPR ... or I will have to contemplate surgical options eventually.

What happens to people who don't take the PPIs or don't go for the surgery in the long run? Does the diet, lifestyle modifications eventually gets this under control and heals the throat - or there is no real 3rd option other than "meds" and "surgery"?

I guess it would depend, but statistically I am curious .. as to what my chances of surviving this thing really are without the surgery ...
Posted 6/12/2011 12:54 AM (GMT 0)
According to Dr. Koufman LPR can cause cancer if severe and left untreated for many years, pepsin causes laryngeal cell damage independent of the ph of the refluxate that's why ppi's dont work.

we have no option but meds or surgery, doctors are just now realizing that there are patients like us that need a different kind of treatment. Thing is we have a disease that affects like 20% of the population, is not really a common disease, it's so uncommon that some gastroenterologists don't even take it seriously.

Diet and lifestyle mod. wont control LPR but if you go out and eat a pizza, chocolate or whatever it will make it much worse

Having LPR is like hitting the jackpot of bad luck, personally im scared of how this will evolve, even if it doesnt progress to cancer, there's a lot of other complications like stenosis and leukoplakia.

Im gonna fight until i can get the surgery done cause it's the only thing i havent tried and im willing to take the risk of not getting better, even if there's a minimal chance of improving i think it's worth the try but i will give Baclofen a try first,
Posted 6/12/2011 1:35 AM (GMT 0)
PPI-Less. When I saw one of your posts I was so relieved that I'm not the only one who can't take PPIs. I'm having such a bad day today I need to vent to someone who knows how frustrating it is to have no options for pain relief. I feel like someone is stabbing my throat with a knife while simultaneously choking me. I've been like this for almost one year now and am very disappointed with my options. I had terrible reactions to the PPIs they made my reflux worse. Did yours get worse with the PPIs. In fact everything that is supposed to reduce acid makes my reflux worse. I just don't understand. My reflux just felt like something was stuck in my throat until I took the PPIs then I got volcanic reflux that is SOOO painful. I took PPIs for 8 weeks and the reflux just got worse and worse. I also had blurred vision numbness in my left arm and leg, gallbladder pain, kidney pain, and hives. It took about 6 months for those side effects to go away and about 9 months for my reflux to calm down. I just had the Stretta done and that has aggravated my reflux back to my PPI days---AGGGGGGHH! I have a Stretta thread about my progress but so far no good, but of course it's too early to tell.
I just wanted to say hi and that I feel your pain and I wish you the best. Let us know what you decide to do. I tried (and am still doing) all the diet stuff. Pretty much all I eat is yogurt, alkaline vegetables, and a little bit of chicken. My EGD went from a Grade I with strictures and what looked like Barretts but wasn't Barretts to just mild irritation but the LPR still hurt just not that bad but bad enough that I didn't want to live with it, which is why I opted for the Stretta. But now it hurts again, but I think the reflux might have been from the Rantinidine the doctor wanted me to take and not the Stretta.
Well, I wish both of us good luck, but I so wish I could take a magic pill right now to make it better. It really pisses me off to see people eat all kind of crap and just take a nexium and be fine, and I eat so clean and am in constant pain. Frustrated!!! thanks for listening.
Posted 6/12/2011 1:42 AM (GMT 0)
Hi PPI-LESS,
I've not been PPI-less for probably 15 years! I was never diagnosed as having LPR specifically, but without having that diagnosis, I'm quite certain that it is what I had. My biggest problem was lung issues caused by reflux.

This is the problem with us LPRs...we don't reflux enough to make GI's interested in treating us. I had horrible asthma caused by reflux (sure, some allergy, but that was managable...the reflux made it unmanagable), yet when I had the 24hr PH monitor testing the first time, it only came up with a DeMeester score of 4.

My GI confidently told me that the reflux was not causing my asthma. End of story. However, it wasn't the end of the story. My PCP and asthma docs both thought differently. That decision by my GI pretty much doomed me to four years of horrible asthma, and high doses of steroids that caused adrenal insufficiency and thinning, tearing, and bruising of my skin.

When i went back (on the constant urging of my PCP who thought my GERD was putting me in a life-threatening position) and had the 24hr test again, the DeMeester score was 14, which is on the high end of normal. Because of all the pressure from my other docs, and my persistence, he finally suggested that I could "either continue treating my reflux with meds (like that was working? Seriously?) or go to see a surgeon to discuss the option of a Nissen."

GI's are very hesitant to recommend surgery to people without mainstream, high reflux, food regurgitation GERD.

I think the reason is this. When they do a wrap, they have to make sure it's tight enough to keep the acid down, but loose enough to allow the food through. Because of that, there may continue to be a small amount of reflux that escapes. Those of us with LPR are very sensitive to even small refluxes. Therefore, we may have the surgery and continue to have our problem. The percentages aren't as positive with atypical symptoms.

Also, there is alway a chance that a-typical symptoms aren't actually caused by our reflux.

So we continue to be between a rock and a hard place.
I can only tell you to be persistent. Get a second opinion. Keep going back. Get your ENT to weigh in on the subject.

Good luck!
Denise
Posted 6/12/2011 1:49 AM (GMT 0)
Denise,

So what did you eventually do?
Posted 6/12/2011 1:55 AM (GMT 0)
Denise and I both had the LPR and we both had the surgery.
Posted 6/12/2011 1:59 AM (GMT 0)
@jasmine8:
PPIs were actually working quite well to control my reflux. However, they were giving me horrible side effects - all nervous system related: dizziness, lightheadedness, insomnia, dry-mouth, knee nerve tinglings eventually leading to knee-aches and so on ... I also get similar effects along with suicidal thoughts, anxiety on the H2s (go figure!) - Gaviscon from UK seems to be helping me the most .. which is the only "acid reducing med" I take now

@Neptunian:
How long have you had the LPR now? I've had it for about 3 months now. Looks like yours is mostly non-acidic types which is why you are wondering if the surgery would work for you or not?

@Denise:
Thanks, I've read all about your travails with your doctors .. but looks like now after your surgery you are in a happy place? On the surgery for LPR then, I would guess that since these wraps start getting lose over a period of time, they probably the LPR symptoms come back before the others do?

Just for my 401K planning purposes :), who was the oldest human with the LPR to have lived? What is the average lifespan are we talking about here before we the LPRers call it quits?
Posted 6/12/2011 2:07 AM (GMT 0)
It all depends on when you get the esophagal cancer.
Posted 6/12/2011 2:34 AM (GMT 0)
@ppi-less malignancies take like 10-20 years to develop. I've had LPR for 9 months now, i started seeing doctors 2 months after my symptoms started. I have weakly acidic reflux according to MII-ph testing.
Posted 6/12/2011 12:49 PM (GMT 0)
btw PPI-LESS do all ppi's give you side effects?
Posted 6/12/2011 12:58 PM (GMT 0)
@neptunian:
Different ones give me different levels of side effects. I've tried prilosec (achy knees), nexium (worst lightheadedness, insomnia), prevacid (achy knees), protonix (insomina, lightheadedness). I tried these back in March/April .. I haven't tried Aciphex yet .. may be I should.
Posted 6/12/2011 3:08 PM (GMT 0)
Ok .. how about humans living with fundoplications? What is the life expectancy? How does the wrap change as the humans age .. does it stay in tact or does it always / necessarily get lose over time (10 years is what I read everywhere).
Posted 6/12/2011 3:40 PM (GMT 0)
Hi PPI-LESS,

Yes, I had the Nissen in February 2009, and I am very happy I did. When I went forward with the surgery, I didn't know if it would help or not, but I felt I had to try it, and at least rule out the effect of GERD on my lungs.

The surgeon expressed concern over the DeMeester score of 14, but he deferred to the GI and other docs. He told me, "If the reflux is causing your lung problem, it will stop the problem."

I had a very bad lung infection before, during, and after the surgery, and was coughing severely throughout the recovery. I was very concerned that I would ruin the repair, and have a failure before I even got started.

After 2 and a half months, my lungs miraculously recovered. The amazing thing was that it was in the midst of the May pollens. I have allergies, and do get some lung reaction to them, but it had been manageable until my GERD got so bad. Finally I was able to put away my nebulizer treatment, that I'd been using several times a day for a year. I was able to reduce my steroid intake as well (although the damage had been done is irreversible) I kick myself for not acting sooner.

My situation is a bit different, as I do have allergies, and get sinus-triggered lung issues during pollen season. The difference is that in the winter months when it is pollen free, my lungs are now healthy. I still struggle during high pollen times, though, but not anything like before my surgery.

I had hoarseness before the surgery that has persisted. An ENT did a scope through the mouth with a strobe so he could get stills during vocal motion, and did not think that it looked like reflux. It was a bit inflamed and swollen, but it ws inconclusive, as it looked like the larynx of an allergic person who coughs a lot (guilty). It could have started as a combination, but it has been going on for so long, and because of my allergic cough it never has a chance to heal.

I am still working on getting my allergies into better control, and hopefully will someday stop coughing.

I went to get a workup with "the surgeon who does all the Nissens" in the city where I've moved, and he said my wrap was intact and he would not touch it.

So...all is well GERD-wise. Do I VERY occasionally get a bit of reflux? Yes, but it is very rare. I go months heartburn free. My wrap is quite loose (I can burp, I rarely experience bloating, and unfortunately, I discovered I can vomit--I always carry anti nausea drugs with me to avoid that, but this illness hit me without warning. Once I knew, I treated myself with the anti nausea drug to avoid continued stress on my wrap. It's always better to try not to vomit when you've had a Nissen, as it could compromise it.)

Because of my asthma, I take a PPI before dinner and 150mg Zantac before bed, just in case. I probably don't need it, but as we know reflux can be silent, I take it anyway. I don't want my lungs to get back where they were. My goal was to improve my lung health, not get off PPI's, so it doesn't bother me to take it. Do I wish I didn't have asthma and could be PPI free? OF COURSE! Luck of the draw. I could probably do fine without (I was never aware of reflux during my 24hr PH monitor (I was PPI free for 7 days prior) which was very different from my painful experience during the test before surgery.

I am extremely happy I had the surgery.
I just wish I'd done it sooner.
Denise
Posted 6/12/2011 5:33 PM (GMT 0)
@PPI-LESS - I think you will be hard pressed to find a lot about mortality rates with LPR. Mainly because LPR is new, and there isnt even a real good definition of what it is. Based on what I have read, LPR patients get Barretts at around the same rate as traditional GERD sufferers (7-10%). Assuming that 5-10% of Barrett's folks wind up with the big C, then you are looking at a likely hood of 0.5-1.0%.

Throat cancer is a different story, and id be willing to bet that there is next to no information out there about the relationship (as far as hard facts). One thing that I do remember reading is that almost all throat cancer patients have tissue bonded pepsin. And something like 80% of them were long term smokers.

So when you break down the numbers, its not great, but id say statistically speaking it is unlikely that you will ever end up with the big C.
Posted 6/12/2011 10:21 PM (GMT 0)
@Chuck_T i understand your point but just because something is rare doesn't mean you wont end up with cancer, even if there's a slight possiblity i think one should be careful, these chemicals (pepsin, bile acids) cause cell damage so it's only logical to think they will cause cancer in the long run if nothing can be done to stop the damage.

On the other hand i've never read a post about a person with reflux related throat cancer but some people don't even know why they ended up with cancer in the first place.

If reflux can cause esophageal cancer why wouldn't it cause laryngeal cancer, we all know the larynx is 100 times more sensitive than the esophagus.


Btw what kinda reflux do you have? non-acid, acid, weakly acidic?

Post Edited (Neptunian808) : 6/12/2011 5:50:59 PM (GMT-6)

Posted 6/12/2011 11:16 PM (GMT 0)
@ Neptunian - Dont know what type of reflux I have yet. My ENT is big on the "3 month trial of double dose ppis" method before running any tests. Had a scope, with no sign of esophagus damage, but positive for gastritis. I was put on Dexilant about 2.5 months ago. I dont know if the Dexilant is helping or not, as my throat is better than it was at its worst, but I would say at or slightly worse than it was before I ever started the PPIs. One thing that I do know is that I did not have gastritis, or traditional heartburn (recent develpment) before the PPIs. I have my 3 month follow-up at the end of the month, and im gonna start putting the full court press on my ENT. There have been plenty of studies that show PPIs do nothing for LPR.

I totally agree with what you are saying about the whole throat damage thing. I should have been more clear, but what I was saying is that the majority of people with throat cancer had tissue bonded pepsin, which basically means they had LPR. The good news for non smokers is that the majority of people who got throat cancer also smoked.

We def need to find a way to get this under control, because we are at higher risk for all sorts of medical complications, not to mention a severley depleted quality of life. Here is hoping LINX works out for us. In the mean time, I am trying to use a little science in my own treatment. I do lots of gargles at high PHs. I believe Pepsin is killed in a PH environment of 7, so I gargle with baking soda water (ph 8). I find that too much baking soda water can dry out my throat, so I also sometimes chew up a tums (ph 10) and take a swig of water and gargle with that (usually spit the gargle out afterward). I have found that this has drastically improved my LPR (starting to think it is more effective than the ppis). Anyways, I hope we can all get this figured out sooner rather than later.

Post Edited (Chuck T) : 6/13/2011 8:46:02 AM (GMT-6)

Posted 6/16/2011 4:09 AM (GMT 0)
Chuck, thank you for your good advice. I think I will start gargling.

Denise, I am so happy that your lungs are better. That is what I am 2nd most worried about (1st is being able to swallow so I can be a healthy weight again). It is so nice to hear your story of success!
Posted 8/9/2012 2:56 PM (GMT 0)
Chuck,

What were the symptoms of your LPR. My sole symptom is chronic throat mucus that is present from the time I wake up to the time I go to bed. Antacids did not work. I constantly walk around with tissues in my hand all day and evening.

Would the fundo operation help for someone such as myself with severe chronic throat mucus. I live in the New York area.

Rosemarie
Posted 8/9/2012 3:10 PM (GMT 0)
Rose,

My main symptom is sore/tight throat. I dont really get many of the other symptoms of LPR. It started off only affecting me during the day, but now my symptoms are primarily at night. I also have IBS.

As far as the Nissen goes, ive heard mixed reviews about if for LPR. Personally its not something that is in the cards for me right now. Ive heard too many horror stories. But there are people on this board who have been helped by the surgery, and it may be an option for you. The LINX procedure has been approved since my last post in this thread, and may be worth looking into. It is MUCH less invasive than the Nissen.

Posted 8/9/2012 3:23 PM (GMT 0)
Chuck,

Thank you for writing back. I know nothing about the LINK procedure. Could you briefly describe it? Also, I am not taking antacids at all since in the past even on two a day for a four month period, they did nothing. Did you seem to feel that not taking antacids could cause a problem up the road?

Rosemarie
Posted 8/12/2012 12:55 AM (GMT 0)
PPIs have only been around for about 10 years. Before that, h2 blockers were the treatment of choice, and most people did fine. Esophagus cancer continues to be rare. It has increased in recent years, in relation to the increase in obesity. I appreciate Dr. Koufmans work, and have benefitted greatly from the diet she developed. But I believe in her book she overstated the risk of cancer.

Post Edited (sunbeam48) : 8/12/2012 11:13:27 AM (GMT-6)

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