Dilemma, which condition do I treat?

[rubyslippers]

I have been diagnosed with very severe GERD and LPR (acid into my voice box causing me hoarsness and inability to teach). Any of the PPI's they have put me on have exacerbated my DES. I am currently on Nexium and my eyes get drier by the day. I went on it on Tuesday. I had punctal plugs put in Friday and they make the situation bearable and I am very glad I had that done.

Will my body adapt to the the Nexium or will the dryness continue until it is unbearable? I keep trading one problem for another. They say I will be on some sort of PPI for life, most likely.

Any experience with side effects--dryness, of Nexium going away. I know that with some medications, your body will adapt. I am despairing.

[NYer]

Ruby,

My situation is very similar to yours. One thing to keep in mind is you do not want to be on PPI's for the rest of your life. If you are on them for more than a year, your risk of hip fracture increases greatly. Also, if you are on them for more than a year, you run the risk of not absorbing certain B vitamins (I think it's either B6 or B12 - off the top of my head, I don't remember). If that becomes the case, your doctor should either recommend a supplement or injections of Vitamin B.

That said, you won't necessarily have to be on them for the rest of your life. Some people need to be on them for months or years at a time. But many people, after a few months, can go off and then may not need them again for another year, at which point you can take them for a few months again.

If you are overweight, lose weight. It makes a BIG difference. The fat around your belly causes the acid to push up into your esophagus. When you lose the fat, it gives the acid more room to swish around in your stomach without pushing up and out where it doesn't belong. I know it's a lot easier to SAY "lose weight" than it is to DO it, but speaking from experience, when you're having a tough time with the acid reflux, it's hard to eat very much anyway, so you sort of lose weight by default. In the past month, I've lost 11 pounds. Part of that was from being on a low carb diet (South Beach Diet) and part of it is that sometimes I just can't eat because the pain in my chest and stomach is bad.

I'm not out of the water yet, but it did make a big difference in the frequency and intensity of the chest pains and heartburn.

I have a big problem with PPI's - all of them cause side effects for me. They are the best means (medically) of controlling the symptoms, though. Although they are all similar in what they do, they do not all cause the same side effects. If you are having bad dryness problems from one, try another - it may be better. The choices are: Nexium, Protonix, Prevacid, Prilosec, and Aciphex. All of them, except for Prilosec, require a prescription.

Some people do OK on a different type of drug called an "H2 Blocker" (ie., Zantac). This doesn't completely block acid like PPI's do - it blocks one component of the acid. It also doesn't last as long as PPI's, so you would more likely take it twice a day. That said, though, I had terrible dry mouth from Zantac, too.

Some people say the side effect symptoms lessen over time. But since you and I already have dry eyes, it becomes intolerable to deal with the additional drying effects (like I had from Prevacid).

Right now, I'm living with a combination of Maalox (over the counter acid neutralizer) and Carafate (prescription drug that coats your stomach and esophagus that you take 1/2 hour before meals - it prevents the acid that is there from irritating your stomach further. It has very minimal side effects and none of the drying). This doesn't help nearly as much as PPI's do but on the flip side, I have no side effects. So rather than trading off one horrible condition for another, I'm just trying to attenuate them both as best I can.

And don't forget to sleep with your upper half elevated (head higher than your tummy) - especially for your LPR (keeps the acid from rolling up into your voice box while you're sleeping).

I'm sure you already know to do these things, but just in case: no coffee (regular OR decaf), no black or green tea (some herbals are OK), no chocolate , no spicy foods, no citrus, no tomatoes (or tomato sauce, ketchup, etc.), no fried/greasy foods.

Good luck with this - I feel your pain (literally). I hope you feel better soon.
-NYer

[rubyslippers]

Your post has been very helpful. Fortunately, I tend toward the thin side, so weight is not something I have to struggle with.

My bed is up 7", and aside from having to crawl up the top several times a night I do think that is helping.

Of the things you mentioned, only chocolate is what I will struggle with. I have never been a coffee drinker. I have known for a long time that citrus bothers me. I forgot and ate 3 rings of fresh pineapple Wednesday afternoon and I thought I was going to die coughing for 12 hours after. My doctor said anything that would burn a cold sore is acidic and so I have to learn to think of that when I eat, but the truth is, right now, anything makes me cough about 30 minutes after I eat. Some things are worse than others though.

How do you know when you are better and can go off? I really don't have symptoms until I get hoarse and start coughing, leaving me with lots of damage that takes a long time to heal. Until it gets to a crisis, I just have no idea it is a problem. I was on Prilosec a year ago, before I ever had the dry eye (medication damage from topical steroids/antibiotics) and he wanted me on it for life. I went off on my own and here I am. He says that it is lifelong, but that does worry me--not only for my eyes, but yes for the other things you mentioned. Hip fracture is a problem for women in my family.

Why is it that DES and GERD seem to occur together? Could the GERD meds be the CAUSE of the DES? I took GERD med in January during the time my eyes were getting worse and worse.

I cannot see that the Nexium is any worse than the Prilosec. Not sure I ever tried Prevacid but I see some here say it is a problem too. I am using the Maalox after every meal and at bedtime. I am going to ask about adding Gaviscon to the regimen because I used that long ago and it seemed to help. I am just tired of trying to sort this all out. Seems like one tiny difference (forgetting to turn on the humidifier or one bite of fries with ketchup) can ruin my whole day!

[NYer]

About two years ago, I was actually on a PPI (Protonix) for 10 months. For some reason, this time, I get side effects - back then, I didn't). After 8 weeks, I tried going off and the symptoms came back after 2 days. After a few months, I tried going to every other day. I got laryngitis (sound familiar?) and it turned out to be from the GERD so I had to go back on it daily.
After 10 months, I realized that the Protonix had caused a big elevation in my blood sugar and I had to go off. Amazingly, when I went off, I had no more symptoms.
So to answer your question, they usually say initially take it for 8 weeks. But most people with a bad case are on it a lot longer. The only way to tell for yourself is to cut down to every other day and if you don't get symptoms, try it every two days and then down to none.
Since you don't get heartburn or stomach symptoms, it's probably harder for you to be able to tell. Obviously, they larynx doesn't start to hurt until after it's been much more irritated, I guess.
Did you check out that web site I posted in the other thread? Just to reiterate, it's:
http://forums.heartburn-help.com
And do a search under LPR. There are a lot of people on there with similar symptoms to yours.

[rubyslippers]

Thanks so much. Yes, I did check out the other site. Everything you say is so familiar. I took Prilosec in January (already had DES from my Dec. bout with pink eye and meds). My eyes got much worse. I did not make the connection. Then the doctor had me go to every other day with the Prilosec. Coincindentally, or so it seemed, my eyes were unbearable every other day. I put 2 and 2 together, went off the Prilosec. Eyes got better. 2 weeks later the coughing got extreme and you know the rest of the story.