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Old 01-21-2006, 11:46 AM   #1
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GERD/LPR & Quality of Life

Hi all,

I'm new here. Have had LPR since July. Do others feel like their symptoms are creating serious quality of life issues? Having to explain our strict diets, annoying co-workers with constant throat clearing, delaying major life decisions like pregnancy, problems sleeping, etc.! I don't think my doctor understands me about all this. I think about LPR every hour of everyday. It influences almost everything I do. I'm afraid to exercise or get out of breath, eat certain foods, be in smoky environments, etc.

I have an appt. with a new doctor this month and want him to understand that this is not "just a little indigestion". I've struggled with frustration, being depressed and feeling hopeless at times about this condition. Then I sometimes feel a little guilty about that-since there are people with terminal or more debilitating illnesses. Do others have the same quality of life issues and find it difficult to describe to docs/others??

 
Old 01-22-2006, 11:39 AM   #2
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Re: GERD/LPR & Quality of Life

Hi Skylar/Aswander - sorry it's a bit longwinded!

Just wanted to say I feel exactly the same. I was diagnosed with LPR in August (have been having problems since February. I understand how you feel - I get fed up with having to explain why I can't eat certain things. Alot of people seem to think it's just a bit of heartburn and I'm sure they think I'm over-reacting. But as everyone who suffers with LPR knows, the horrible problems that it can cause are really distressing to say the least. I've actually thought about taking anti-depressants due to my symptoms. I also worry about the side effects of taking long-term PPI medication but as I really don't have any choice, I have to take them. The only good thing about this is that I'm really grateful for these boards and I've learnt so much from reading them and it's good to know that I'm not the only one out there.

Also, wanted to say thank you to Aswander and how helpful and interesting I've found all your posts on the boards. I had been suffering on with 1 nexium per day and wasn't aware that the dosage for LPR was 2. Am hoping after a couple of weeks the symptoms will start to improve. Could I just ask - have all of your symptoms gone away completely on that dose.

With regard to pregnancy - I guess it depends on whether you can live with the LPR symptoms for nine months without medication. I've got two children aged 8 and 10 and during my pregnancy I only ever suffered occassional heartburn (never LPR or gerd). I'm not sure what caused my LPR as I haven't got a hernia, am not overweight and have never had a bad diet. I believe mine was caused by a period of stress and anxiety.

Anyway, good luck to both you you and everyone who is affected by this.


 
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Old 01-22-2006, 01:13 PM   #3
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Re: GERD/LPR & Quality of Life

Skylar, Aswander and Kitty,
I also have LPR diagnosed about a year ago by two ENTS by direct fiberoptic laryngoscopy. My pharynx and vocal cord area was red and irritated. Yes it has affected my quality of life big time. I'm a 49 y/o female who is used to being physically active playing tennis, bike riding, etc. Now the pain in my throat is all I think about and is all consuming. I was on Nexium for about 4 months which I thought didn't help so I weaned my way off of it. Big mistake... I did fine for about 5 months and BAM now I've got a throat so sore it's painful to swallow.
So now back on Nexium 40 mg twice a day. I still want to get the double probe PH study but will have to go out of town to have it done. I really want to know if this is definitely LPR and not some sort of vitamin deficiency, allergy, hormoe imbalance, etc.I swear once I had a hysterectomy/oophorectomy two years ago I went downhill. Do you guys get a real bad sore throat? I looked at my tongue and it looks like i've got raised red bumps on the side and probably where the tongue meets the pharynx because it's soo sore there but I can't see it. Also, now I cough alot which is new. I'm hoping endoscopists perfect the endocynch, blocking or stretta procedure. I don't want a wrap done. This is a horrible horrible disease. Take care and if there is anything new in treatment I'll let you know.

Last edited by moderator2; 01-23-2006 at 05:04 PM.

 
Old 01-22-2006, 01:56 PM   #4
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Re: GERD/LPR & Quality of Life

Skylar,
Yes LPR affects quality of life horribly, do not feel guilty, it is not our fault that people with perfertly good health have no empathy for us. I can totally understand people with life threatening diseases not having empathy, but those arent the people who show no empathy. I bet people with life threatening disease would actually have alot more empathy for us than fully healthy people.

 
Old 01-22-2006, 02:51 PM   #5
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Re: GERD/LPR & Quality of Life

I think my prblems also started during a period of major stress-so this is likely the source. And yes, I often have the feeling that people just don't understand (doctors included) that yes, this is a big deal! No, I'm not overreacting! It is not "just a little heartburn". And yes, I have a sore throat as well, but it comes and goes.

I think part of me is just mad about having all this-sometimes I feel just really frustrated about it. I also worry about the long-term effects of PPI therapy, especially since the drug manufacturers tell you not to take for extended time...

 
Old 01-23-2006, 09:19 AM   #6
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Re: GERD/LPR & Quality of Life

Kitty,

Yes, I have recovered quite decently. I feel like I'm at 95% of my old self now, but I was only able to go from 75% to 95% by changing my diet, in addition to the meds.

Once I started eating frequent, but very small portions, and cut out all fried foods, I went to 95%. Making sure to avoid stomach contractions in exercise was also an important factor.

It is wonderful to get my coughing to a minimum these days. I don't even cough after meals, as long as they are small. But I'll be frank - it was very difficult to relearn my eating habits - in the past, I really liked to have at least 1 large meal a day, and I found that it would really exacerabate all the LPR symptoms. But over time, I've ajusted to my new eating style, and have lost significant weight, to boot.

I also seem to be able to eat more foods than most of the people on this board. Coffee, tomatoes, spicy foods - they don't seem to bother me, as long as they are consumed in small quantities. For instance, I will have a cup of coffee, and it won't be more than 8 ounces. If I drink more than that, it does bother my stomach.

When I was really sick with LPR, before I started the Nexium twice a day, I literally took to bed and didn't get out for a few months, because the only way to stop the coughing was to lie prone on my right side. During that time, I was very unhappy, and totally sad about the situation. I am such an optimist naturally, but nothing would fix the problem. I just wanted to live my life again, and really thought about how much longer I could hold out in that life unless I found a treatment. Trying to explain these feelings to my family only met resentment as they thought I was depressed. It was horrible to have them making uninformed blanket statements about my condition, when I was telling them the truth about 1) needing their help to find a proper medical doctor who could diagnosis the problem) and 2)needing to lie down to feel more physically comfortable (they took this incorrectly as a sign of depression). It really frightening to not got help from your family when you are really really ill, because they've never heard of your illness and want to believe that it's all in your head. I still can't believe it to this day, but they really thought at the time, that I had some mental condition that was causing me to cough, and they told me that they would take me to a psychiatrist, but would not help me find a medical doctor.

I guess I'm just trying to sypathize with everyone who is experiencing a major downslide in quality of life due to LPR, and that quality is not just about how you physically feel, but also how your loved ones react to your condition, diagnosed or undiagnosed. It's a lot easier to get through it with caring, loving people supporting you and helping you.

 
Old 01-23-2006, 09:29 AM   #7
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Re: GERD/LPR & Quality of Life

aswander,
I wanted to thank you for all your input on this board. You seem to have very knoweldgable doctors and have gained alot of knowledge from them. Thank you for passing everything on to us. It is nice to know there are others with the same problems and we are not crazy I really appreciate all your advice and your personal experiences.
Thanks again,
Andra

 
Old 01-23-2006, 09:43 AM   #8
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Re: GERD/LPR & Quality of Life

Skylar,

It looks like the moderator deleted my previous posts to you. My apologies to the moderator if I violated the posting rules with my email.

Skylar, I really understand how your feel nervous about taking medication every day. However, LPR is a serious condition, and left untreated, can lead to even less pleasant possibilities, like laryngeal and esophageal cancers, and Barret's esophagous.

What you need to start with, is changing your meds regimen to the standard LPR regimen of 2 doses of a PPI per day. For me, that is 2 40mg Nexiums, for a total of 80 mg a day. I take them together first thing in the morning, then wait 30 minutes before eating. I am voracious about making sure that LPR sufferers understand that the treatment protocol for treating LPR is different than for treating GERD. 1 pill a day will not work for you. As someone who has had this for 3 years, I have personally achieved great relief from LPR with the 2 dose a day regimen. If your doctors haven't mentioned the 2 pill a day regimen, it's probably because they never heard about it. Most doctors have never even heard of LPR, it is barely known as a condition and most doctors do not know how to treat it. The only ones that seem to are doctors affilitated with major teaching hospitals, like Yale-New Haven, and the University of Pennsylvania. I recommend that you try Nexium first. Nexium appears to have the best response with the people on this board. It is also the most effective, probably because (i think) it has the highest concentration of medicine in it. If your insurance covers 1 per day, you may have to get special permission from your insurance company to get it 2x a day. In the meantime, you can get samples from your doctor (drug reps love to hand them out, so don't be shy about asking for a bagfull of them). Prilosec OTC doesn not work for LPR sufferers. The active ingredient is a slightly different molecule than Nexium, and it probably will not give you relief, even if you take 8 a day. I personally tried to switch at one point from NExium to Prilosec, and I just got sicker and sicker. If Nexium doesn't work, or you can't afford it, you may want to try Prevacid, Protonix, or Aciphex.


In addition to taking PPIs, you will probably want to supplement your PPIs with some H2s in the evening. H2s are the 2nd generation (before PPIs) of acid-reducing drugs. They are sold over the counter under the names Tagamet, Xantac, etc. The active ingredient in these drugs in what is known generically as ranitidine. Thank god these drugs are cheap. Since Nexium only lasts 17.5 hours, I take 2 Ranitidine before I go to sleep. I get my ranitidine generically from my insurance company, because I take it in such large doses and frequently, that it's cheaper for me to go through my insurance company for the generic than to buy the H2s OTC.

I really think you'll find much better relief if you start with these 2 steps. Diet modification is important, but just start with this and you should feel a lot better. No quality of life stinks. You need to fix that and get better - and this is the way to start.

As far as your hesitation to take the meds, I can't really help you with that because I have been told by each doctor knowledgable about LPR, that I will need to take my Nexium for life, and that LPR does not get better on it's own. The loss of pressure in the esophageal spinchters is a permanent condition. You can always look into having the nissen fundoplication surgery as an alternative but really wait on that if you can. My own doctors do not think it's perfected, and have told me that even with the surgery, I will probably need to continue Nexium. I am also scared to death of this surgery after reading other posts from people who have had it on this board. They don't seem to have achieved much relief at all. My doctor told me there are some experimental surgeries at the time, but gave me excellent advice in telling me to hold out for 5-10 years, and then reevaluate based on surgery results at that point.

2 Nexium a day, hopefully won't cause any new problems with your health. I am very grateful that I haven't had any complications using Nexium 2x a day. Once, I accidentally took 3 Nexium one morning, and wound up feeling kind of dizzy for 5 or 6 hours. But 2 Nexium doesn't affect me negatively at all.

I would much rather take the 2 Nexium a day, then ever have to suffer the horrible effects of LPR again.

I'm 32, and close to your age. No children because I put off having them until I could get this under control.

 
Old 01-23-2006, 10:35 AM   #9
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Re: GERD/LPR & Quality of Life

Anybody,
Have any experience with taking higher doses of PPI's like 3 a day? I was doin that for a while and getting some relief from that...then my doctor told me he didnt want me doing that..so i am back down to 2 a day and I feel significanly more miserable. I really think the doctors i have seen have no clue what they are doing.

 
Old 01-23-2006, 05:01 PM   #10
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Re: GERD/LPR & Quality of Life

Aswander,
I was diagnosed with LPR almost a year ago and find it interesting that you take two 40 mg tabs of Nexium together at the same time first thing in the morning. I am also on 40 mg of Nexium twice a day but take one in the morning, wait an hour to eat and then take one in the afternoon, and again waiting an hour to eat. Is it as effective just to take two in the am right off the bat? I thought you had space them apart and also wait an hour before eating? Glad I read your post, I'll ask my ENT doc about it. My biggest problem and fear is the constant sore throat. It never completely goes away, just waxes and wanes in intensity.

I thought that was interesting your doc said to wait 5-10 years on the new alternative tx's besides the Nissen Fundo. I see that the Mayo Clinic offers the endocynch, plicator and stretta endoscopically. That's three methods endoscopically that I think are worth looking into for me. I can't wait 5 years!

 
Old 01-23-2006, 06:56 PM   #11
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Re: GERD/LPR & Quality of Life

Hi Suncat,

I've tried spacing out the Nexiums as well, but it doesn't seem to be as effective for me as taking them together. LPR is unique in that most patients reflux the most during the day, and much less at night. This is the opposite of patients with GERD. Since PPIs are effective for 17.5 hours, I've found that taking the 2 PPIs together packs the punch needed to reduce the acid during the day. By the time I go to bed, they have begun to wear off, so that's why I supplement them with 2 doses of an H2 inhibitor - I use generic Ranitidine, which is the same drug as OTC Xantac.

My father-in-law used to take Nexium for GERD, but stopped because of extreme dry mouth. It's interesting that his physician prescribed him the same H2 regimen that I take - 300 mg of Ranitidine a day, in place of the Nexium. He has found that it is a perfectly good substitute for the Nexium in relieving his GERD.

 
Old 01-25-2006, 09:38 PM   #12
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Re: GERD/LPR & Quality of Life

So if LPR sufferers have more acid problems in the day, must they sleep propped up in bed like GERD sufferers? I have been sleeping in a chair at night - not because I feel better but because I didn't want acid coming up into my throat and doing more damage. Also, why is there more problems with acid in the day? I seem to feel worse when I don't eat but the irony of it is - I feel just slightly better when I wake up in the morning even if I sleep in the bed lying down. Could someone please explain why?

 
Old 01-25-2006, 10:07 PM   #13
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Re: GERD/LPR & Quality of Life

It is kind of weird. I feel the same way. When I go to bed I don't feel all that great but I don't prop myself up and when I wake up after I get over my nauseous spell that lasts about 20 minutes I feel better too for a few hours then it goes downhill from there. Why do people with LPR suffer during the day and not at night??

 
Old 02-10-2006, 12:58 PM   #14
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Re: GERD/LPR & Quality of Life

Quote:
Originally Posted by aswander
Hi Suncat,

I've tried spacing out the Nexiums as well, but it doesn't seem to be as effective for me as taking them together. LPR is unique in that most patients reflux the most during the day, and much less at night. This is the opposite of patients with GERD. Since PPIs are effective for 17.5 hours, I've found that taking the 2 PPIs together packs the punch needed to reduce the acid during the day. By the time I go to bed, they have begun to wear off, so that's why I supplement them with 2 doses of an H2 inhibitor - I use generic Ranitidine, which is the same drug as OTC Xantac.
I have GERD but I also seem to have some LPR symptons occaisonally. I found that mixing a PPI (Previcid in my case) with an H2 inhibitor much less effective than just taking the PPI. I have found research on the web which indicates that the H2 can prevent the PPI from working.

 
Old 02-10-2006, 02:36 PM   #15
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Re: GERD/LPR & Quality of Life

That's very interesting and I'd love to know more about that drug interaction. I've never been 100% certain that the H2 supplements at night were helping, but they've never appeared to hurt either. I'll have to do a little searching and find out more.

 
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