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Just diagnosed with LPRD... Help!

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GERD & Acid Reflux
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Posted 10/23/2011 4:26 PM (GMT 0)
I'm a 44 year old female and was diagnosed with LPRD following 4 years of cancer treatment.  Never had reflux before and I imagine it is the cumulative effect of all my chemo and treatment.

I was prescribed Nexium before my largest meal of the day and Zantax at night.

I have a very bad cough that prevents me from eating and excercising.  I've lost 15 pounds in 2 months and I can't run or play tennis.... things I do to keep me in shape mentally and physically, which is very difficult.

I'm wondering... Is this a permanent condition?  Is there a cure?   The meds do not seem to be working and I'm finding I can't eat very many foods or after about 4pm without paying the price.  I'm aware of all the foods, etc...  Is there anything I can do to recover from this or will this be my life from here on out?

would love your help.  Thanks!

Posted 10/23/2011 6:48 PM (GMT 0)
Hi Meeshie,

Welcome to Healing Well!  You're definitely in the right place. 

How long have you been on the Nexium and Zantac?  It takes some time for them to reach full effectiveness (about 2 weeks).  After that, assuming that they take care of your acid, it will take time for the tissue in your lungs and esophagus to heal. 

I had asthma before GERD, but the GERD made my asthma far, far worse.  After four years of struggling with unhealthy lungs, and many episodes of burned esophagus, I had the Nissen surgery to tighten my LES, and thankfully it worked.  My lungs improved in about two and a half months, and have been far, far better ever since.

So...the answer is no.  You don't have to live like that forever.  If the medications don't work for you, surgery will be able to correct the problem and get your lungs back in shape so you can become active again.

Hopefully the meds will be enough.  They are for many people.

Now, if you do decide you need surgery, you might have to fight for it, because LPR is a different type of GERD and sometimes GI docs and surgeons don't like to do the surgery because it's not always as effective.  The people they love to operate on are the ones with wide-open LES valves that allow food and acid to reflux freely into the esophagus and mouth.  They are certain that these people will be helped by the surgery.

I, like you, had more atypical symptoms, and it took longer to convince my GI doc that surgery would be helpful.  My family doc and asthma doc were both certain that the reflux was causing my problem.  However, when tested, my reflux levels/occurances were not what the GI doc felt were bad enough to warrant the surgery.  Finally after persistance by my docs and me, he decided that perhaps I could consider surgery. 

So, don't assume you need surgery, but if you do, don't give up if you're put off.  I expect that you will be having lots of adjustments to medications before surgery is even considered at all.  Give the meds a chance, but if they don't work, you do have another option.

Again, glad you've joined the forum! 

There are lots of people here in the same boat, so they'll surely have more to add.

Best wishes!

Denise

Posted 10/25/2011 12:41 PM (GMT 0)
I've been on Nexium and zantac for about 8 weeks.
My pulmonary function test was normal so no issues with my lungs.
My biggest problem is a debilitating cough...
Thanks so much for your reply. I'm really at my wits end.
Posted 10/25/2011 1:32 PM (GMT 0)
Meeshie,

How were you diagnosed with LPR? There are basically two thoughts right now on LPR. One, that acid from your stomach is shooting up to your throat and two, that there is some sort of neuropathy in the nerves of the throat. Here is an interesting read from the leading expert in the field of LPR that pertains to chronic cough.

http://www.chronic-cough.net/tag/acid-reflux/

If your LPR is acid related, than you should be treated with double dose ppis. I found the only one that worked for me was 60mg of Dexilant (you only have to take one pill bc its time released). Unfortunately, I dont think that I tolerate the medicine well as it gave me anxiety and stomach problems. Taking PPIs can take months to heal your throat. Something that helped me in the mean time was to chew up tums, take a sip of water, and gargle the mixture (spit it out after).

If your LPR is related to some sort of nerve damange, than drugs like Elavil may help. I would recomend asking your ENT. But go in knowing that LPR is relatively new to the medical field and its possible your ENT may not know. I am no expert, but I would bet 4 years of chemo did a number on your nerves.

Personally, I would make surgery a last resort as it has limited success on people with LPR.
Posted 10/25/2011 2:01 PM (GMT 0)
Hey Meeshie!

I echo Denise's welcome to HealingWell :) This site is an amazing resource.

Finding the right PPI for you, as Chuck T was saying, sometimes isn't as easy as we'd like it to be. I am lucky that Nexium seems to be working for me (I also completely changed my diet and lifestyle which I know helps), but others have tried few to several others before finding a PPI that works for them. My own doctor told me that a PPI needs 2 whole months to take effect, so unfortunately sometimes there are several opinions on one topic :(

I'm sure you're no stranger to the doctor's office, but I want to kindly remind you to be your own advocate. Don't be afraid to go back to the doc and tell him or her that the medication is NOT working for you. There is no need for you to suffer more than you already have, especially if it's unnecessary.

I'm sure everyone else is getting tired of hearing about this, but as far as living with it the rest of your life... the only time my symptoms are completely gone is when I follow a vegan diet. I can have little bits of meat and cheese here and there, but nothing in excess and still be okay. However, when you start changing your diet you notice things that might bother you that you hadn't considered. For instance, I'm almost positive that I've been lactose intolerant for years without knowing it. I would never had known had I not kicked the dairy in desperation to get rid of those terrible symptoms. I'm not saying go as extreme as veganism, but making small cuts here and there might make a world of difference.

Best of luck to you, Meeshie! Please update us on your condition. Again, welcome to HealingWell, I hope you find good advice and lots of caring here :)

Ashley
Posted 10/25/2011 2:26 PM (GMT 0)
Wow, you guys are great. What a tremendous help as I'm in the dark.
I was diagnosed by an ENG who looked down my throat and in my nasal cavities. I've also had a complete bronchoscopy to get cultures, biopsies, etc. All negative.
ENT seemed pretty certain it's LPRD.
I do feel that my treatment and radiation to this area may be playing a role. neuropathy seems to make sense, nerve damage, muscle damage, etc.
Like I said, it is really the cough that is the problem. It's around the clock and really really difficult. Even tougher than what I faced during cancer treatment (ok, almost).
I'm going back to the ENT tomorrow to discuss all of this. I like the idea of Elavil as I saw this is good for PTSD which I may have from the long years of treatment.
Thank you again for your thoughtful replies. I can't tell you how happy I am I found this board!
Meesh
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