LPR - What Comes First? (Or Next?)

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MountainReader

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It sounRAB like you have a good first plan of attack on this to begin with.

My advice on who to give the lead to is to who you need the most and who you feel can help you the most and who you trust the most. Really, you are taking the lead yourself at this point. In my case, while I have a good ENT (primarily for allergies and sinus problems) and GI doc, it was my Pulmonologist who helped me get even more aggressive in my treatment. My LPR symptoms were more of a major chronic cough and acid triggered asthma attacks though. I was seeing a GI doc and already on meRAB, but he didn't see the urgency my Pulmonologist did. My Pulmonologist did a Modified Barium Swallow and Esophagram on me that showed the extent of the severity of my reflux issues that my GI doc didn't catch with the other tests. Every test I had with one specialist, I sent to the other two and my PCP as well. I wanted to ensure things were coordinated.

I was after my mom for years to get checked for LPR. The more research I did as I was diagnosed, the more I realized that while her symptoms were different than mine, they still lead to the LPR path. As of a few months ago, she found an awesome ENT who really takes a strong approach in LPR treatment, allergy treatment, asthma and breathing treatment, and sleeping treatments. She views them as all connected to the throat issues my mom has and has my mom visiting about once a month to check on what is working and what isn't. It is a bit of trial and error to find the "right" solution. Anyway, she scopes my mom to take a look at her vocal corRAB at every visit. If my ENT had done that years ago, I probably would have spent less time at the other specialists.

As for the GI doc, I just did medicine trial and error with him. The pH testing and Manometry he had done also confirmed what I was up against with regarRAB to my low functioning LES and reflux severity.

As for what most people with LPR do for a doc, I don't think there is any one standard. I think many many people see their PCP for too long. I personally like the ENT and GI doc corabination in general. For me the Pulmonologist just rounded out my triad of providers for this. Good news for me right now though is that I'm just down to visiting them all for regular check-ups at this point. My story in getting things under control is long though. I think you are way ahead of where I was early on in this. That really is something good.

As you said before, even if you don't like the diagnosis, at least you know what you are working to "cure" or get under control. That is at least something.

As for the diet thing, there are other food and drink modifications that you should be making. No greasy or fatty food. No spicy fooRAB, including onions and garlic. No acidic fooRAB or drinks like things with tomatoes and citrus. No alcohol or tobacco. Reducing dairy also helped me, although that isn't a standard on the reflux list.

Not many people with LPR have success on Prilosec. If you are getting help on it, that is terrific. Gaviscon supplementation really helped me. Watch taking too much. That could trigger diarrhea. Also make sure you are drinking enough water when you are using it.
 
I could use some help from those of you more experienced with this. I recently was diagnosed with LPR by an ENT doc. He started me on PPI therapy. Based on what I now know, I've had LPR symptoms for 5 years (chest pressure, choking at night, sore throats, loss of voice several times a year), but it was never diagnosed. My big question is whether I need an endoscopy. I saw a GI doc for a consult after the ENT diagnosed me, but both doctors are leaving the decision about the endoscopy up to me. I hate that - I really could use a "yes, you should have one" or "no, it'd be overkill" opinion. After all, I don't know much about this! But I'm not sure how much the GI knows about LPR either. Is it important to look at the lower esophagus to see WHY you're having the LPR? I've had such chest pressure and aching at the bottom of my breastbone that I think there's a good possibility that I have a hiatal hernia, but I wonder, too, if the aching there could be caused by erosive esophagitis. Don't you need to know if you have that? Or if you do the PPI therapy for a few months and it resolves your symptoms, is there maybe no need for an endoscopy? (That's what the GI doc seemed to be telling me.) I'm not sure what to do at this point. Voices of experience...feel free to chime in and thanks in advance!
 
Kapidex is one of the PPI's that is supposed to heal erosive esophagitis. After 3 months you should have seen some relief in terms of that. I believe many people only take PPI's for the duration of healing to take place.

With my particular symptoms and issues, I'm on it for life or until something "better" comes along. If it works though, it is worth it to me.

If you are not aware of it already, there is a manufacturer coupon on their website. It is good for a year of refills and provides an "instant" rebate of up to $50 when you fill your prescription. Even though it is an expensive medication with my insurance co-pay, I've been able to pay only $5 co-pay since I first went on it. I understand when my year is up, I should be able to just sign up for a renewal coupon.
 
MountainReader - you are such a help. :)

I'm a pretty healthy eater already and rarely eat fried or fatty fooRAB, so that's not a big challenge for me. I was a loyal, daily tea drinker tho' (several cups a day in the cold months) and also a chocolate loyalist (the good, dark stuff), so giving those up has been hard. In fact, I wonder if the tea habit might have been the biggest contributor to my reflux, perhaps relaxing that LES. The bad thing is - because I didn't know I had any reflux issues - the worse I felt, the more hot tea I would drink.

As for the Prilosec, yes, everyone I know with GERD seems to be on Nexium, but the ENT doc told me that Prilosec would work better at one month than at one week, so I'm trying to hang in there and give it the time to work for me (if it's going to).
 
You might want to get an Endoscopy as a precautionary measure. I wouldn't necessarily worry about there being esophageal damage though.

Often with LPR, the irritation is in the throat and the rest of the esophagus looks normal. That was the case for me with my two Endoscopies I've had over the years.

I think part of it is because the acid doesn't settle in the lower part of the esophagus and moves quickly up to the throat. The throat irritates much easier than the rest of the esophagus. It only takes a little acid to give you lots of irritation for LPR.

Have you made lifestyle changes yet? Change of diet, wearing loose waistbanRAB, sleeping on an incline, etc...?

With regarRAB to the PPI's, there isn't one standard one that works for people with LPR. Everyone finRAB the one that just works best for them. Sometimes it takes time to work your way through PPI's until you find the right one for you. Typically for LPR, most people find that they need to take the PPI's twice a day. The exception to this is with Kapidex which is delayed release. Most people with LPR don't end up going off of the PPI's in the short term though. I've been on them for years and expect to remain on them.

It is difficult to find a doctor (ENT or GI) to diagnose LPR. It is a good thing if your ENT is that aware of it. It couldn't hurt to consult with a GI doc though if your treatment doesn't progress as you want. Further testing can confirm the extent of your reflux. I've found the 24 hr pH and Manometry to be the most helpful. They indicate how well your Lower Esophageal Sphincter is working and the duration and frequency of your reflux. For me, it showed that my LES really wasn't functioning well at all.

As for the hiatal hernia, they can be diagnosed by the Endoscopy, but it was a Barium Swallow that actually showed the extend of the hernia I developed over the years. The endoscopy really didn't reflect it that well. Most doctors don't worry about the hiatal hernias though unless they get really large and cause other medical problems.

Good luck finding your solution.
 
LPR really is a "silent" reflux. Many people just aren't aware they have a reflux problem because they don't feel the "burn" of the acid. That is what makes this so challenging.

It is tough giving up the things you love. There are days that I crave things I know I shouldn't have. I've lived on water and soy/almond milk for several years now and I'm so bored with the lack of variety. Unfortunately, I have yet to find a good replacement for those things I had to stop drinking. Once I finally got things better under control, I've been able to "cheat" and have some tea occassionally. As I said before though, my reflux was on the very extreme side so I'm not typical. Many people think tea and just think the caffeine. You are wise to realise how it is relaxing the LES. Hopefully you can get things under control and add the tea back in moderation in the not too distant future.

Personally, I'd go Prilosec over Nexium in a heartbeat. Nexium was the worst ever medicine I was ever on. It literally messed up my gut to the point I have lifelong IBS now. I wasn't on it for long, but got horrible side effects from my first dosage. I assumed that the side effects would go away when I went off the medication, but they remain still today after 17 months. Just because it is popular, doesn't mean that it is the best for you.

You really do have a good initial plan in place. Good luck as you work through it.

Take care,
MountainReader
 
Does the kapidex help heal the erosiveness of the larynx from acid reflux ? I have been on it now for about 3 months..
 
No my throat is not soar, never has been really sore, but i know its eroded, and causes some other irriatating problems, but problems that should be resolved from its healing..I am due for another scope in early febuary, I may request it before then but i am trying to let the medicine work its magic,for I had this disease a few years before it was detected what it was..so i am sure its pretty eroded, but not cancerous says my ENT..
 
Thank you, Mountain Reader, for such an informative response. I've been on the PPI (Prilosec 20 mg. twice daily) and Gaviscon for 2 weeks now and my mouth and throat feel much better. Yes, I've also made lifestyle changes -no more caffeine or chocolate, only very small meals, no eating at all after 6 pm or so, and I'm sleeping on a wedge pillow now (which, BTW, is more comfortable than I thought it would be). My chest discomfort continues. I never did have heartburn, just pressure and ache behind my breastbone. On some days the ache and pressure are mild; on other days (like today) the ache is strong and I worry about what my esophagus looks like. I assume that if I have erosions the Prilosec will eventually allow them to heal, so maybe I just need to "wait and see." On the other hand, the endoscopy might answer a few questions. Just having the ENT scope my throat as far down as he could go, just having someone actually LOOK at what was hurting me was an enormous relief. I didn't like the LPR diagnosis, of course, but at least with the diagnosis you can start attacking the problem instead of just sitting around wondering if it's all in your head. Yes, I do feel lucky to have gone to an ENT who seemed informed about LPR because I had never heard of LPR before. I had pushed to see him only because my mouth and throat were hurting so much and I figured I had to start somewhere. I had an appointment with the GI doctor for the same week never suspecting it was all related. And I don't think my family doctor ever suspected it was all related either. I saw him 5 times in one month - aarrgh, so frustrating (not to mention expensive). Having the ENT instantly know what it was even before he scoped me, well, I almost wept with relief to finally talk to someone who seemed to know what was going on. This is a big problem tho' I think - the ENT covers part of the LPR territory and the GI doctor has to cover the other part. I'm not even sure who should be "primary" on this in terms of continuing treatment. The ENT? The GI doc? I like this ENT doc so much, but he can't see my esophagus. I guess I could have the endoscopy by the GI, and if there's nothing to be concerned about there, I could just go to the ENT doc whenever I need LPR help. Does that sound logical or do most people probably use a GI doc for LPR treatment? I have so much to learn!
 
mountain reader said:



Does that mean the larnex as well ? Are they connecting the two i wonder ?




Yes I am aware but thank you for you answers and support..
 
Were you asking if the Kapidex would also heal the larynx? I'm new to all of this (and so don't take this to the bank!), but it's my understanding that the same PPIs that are used to treat GERD are also prescribed for LPR, but the dosing usually neeRAB be higher for LPR. So I would say, yes, the Kapidex should be allowing your larynx to heal (just as it allows the esophagus to heal) by keeping your acid levels way down.
 
Is your throat still sore? If not, I'm guessing the Kapidex is keeping the acid at bay and allowing your throat to heal. The Prilosec (or something) may be working for me because my mouth and throat feel way better than they did just a few weeks ago. I see my ENT again in another week. I'm wondering if he'll scope me again to see if my larynx has healed. I almost hope he does. That laryngoscope is nothing to fear and I'd like to know if things look better in there.
 
Yes, thats what I was asking. In fact its time for my refill today, I will try and use another coupon..
 
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