Hey everyone. i have to have a pH test done on July 20th... That means I have to stop my Nexium today. I take nexium 40mg twice a day. If I even miss 1 dose I'm miserable for days.... Now I have to be off my nexium for 10 days. What am I going to do? Will I make it?
Hopefully the pH test will help tell us something to better treat my LPR.... I'm so frustrated.
I had my third 24hr PH-study done in June, and I have nbeen on Nexium 40mg twice daily as well. THis time around I was off nexium for 12 days, and used gaviscon advance to help with the indigestion, and didn't take any gavisoc from 2 days from the study, and used chewin gum untill the day before.
Strangely enough didn't take the symptoms were that bad, and stomach pains were actually better, but what was even more interesting to me is that this time around that the symptoms were not that bad and I was quite happy but I was definitely found to suffer from acid reflux with demeter scale of 26.1 the longest acid reflux episode was 9minutes?!!! and PH level of 1.1!!
The test is worth it, try gaviscon advance it will help you.
pH testing measures the amount of acid coming up into the esophagus or throat, depending on the location of the probe. It will measure refluxing events and tell you the acidity, frequency and duration of those events. With a 24 hr pH test, they typically place the probe just above the lower esophael sphincter. This is done through a tube that is placed down your nose into your esophagus and coming out to a computer that you wear on a belt or around your neck for 24 hrs. You keep a log of your refluxing events and note things like when you are prone or when you eat meals. Usually you will have a Manometry before the pH testing. The manometry measures the esophageal pressure and helps them place the probe in the correct position.
There is also a Bravo pH test that is similar, but in a "pill" format so you don't have to have the tube coming out your nose.
If you have LPR, some ENT's will do the pH test with the probe above the upper esophageal sphincter.
Glad I had the test too. I was worried about the results of my last pH test because after 8 months of a flare-up, I wasn't feeling symptoms on the day of the test and I thought the pH wouldn't reflect how much I had been suffering. Turns out that my Demeeter was at 48. It was in the low 30's just a couple years before. Makes me wonder what it would have been on a "bad" day.
Testing is really useful in determining the next steps in treatment.
I have no idea as what to do next. I was referred to see a surgeon 6 months ago, but based on my PH levels at that time he didn't think surgery was the best option since I also suffer from stomach stabbing pains and vloating that he didn't think was related to reflux.
He said the surgery would make the bloating worst and asked me to repeat the Ph study. Now that I have repeated it my GI said I could either stay on nexium for the rest of my life 40mg either once or twice a day up to me based on my symptoms, or I could go back to the surgeon and discuss surgery.
I am lactose intolerant as well, and have endometriosis, and I am also anemic.
I have burning mouth now, which has come back after 2 years, and my LPR is getting worst again.
I have no idea what to tackle next?
I am scared that I will get cancer of throat or something, and would give anything to go back 3 years since suddenly my life has changed due to all these issues.
Any suggestions, and advice would be most welcome.
I can't tell you what to do as that really is an individual thing, but I'm happy to share my experiences. LPR really is a tough condition with no "cure".
I was able to get my LPR under control for about 6 years on twice a day Prevacid. My primary symptom was a chronic cough. Of course, I have coughing as a symptom for my asthma and as a side symptom from allergies and frequent sinus problems. I've never been a "heartburn" person. When my coughing returned several years ago, that was when I went from once to twice a day on the Prevacid. For some reason the Solutab form worked best for me.
When things got bad about 1 1/2 years ago, I thought it was just my asthma. It was my Pulmonologist who helped determine, through my history, Barium testing, the pH testing, Manometry, etc... That my reflux had become life threatening because it was badly irritating my lungs and I was also aspirating the acid. It got to the point that I needed emergency treatment and was borderline for being admitted to the hospital. For about 8-9 months, I coughed almost non-stop and couldn't get a good breath.
Last summer, I switched PPI's once per month trying to find one that would work better. Even on two per day, none ended up helping. In fact, the Nexium gave me permenant IBS. I've become a bit anemic as well so I have constant digestive issues too. I try to avoid dairy, spicy, fatty, citrus, all raw fruits and veggies (no lettuce). I sleep with my bed on an incline as well. I also supplement with Gaviscon. (Too much of that can cause diarrhea to be worse though.)
With regards to the cancer scare, I've had severe reflux diagnosed for about 7 years (think I had it long before but didn't realize it) and have absolutely no esophageal irritation. With LPR, the acid comes up to the throat so quickly, that most of the time, EGD's don't show damage. The problem with LPR is that it just takes a bit of acid to irritate the throat because it is so sensitive.
Have you tried other PPI's? You might find one that works better than your Nexium. For LPR, you should be on twice a day or on time-released Kapidex 60 mg.
When my LPR became so life threatening, I ended up going the surgical route with a Laproscopic Nissen Fundoplication. My coughing was gone when I woke up in the hospital and has remained gone since my procedure last October. I'd repeat this surgery in a heartbeat. I do still have serious acid production so I still take the Kapidex or Previcad x2 daily and watch my diet and lifestyle too. Per my GI, stopping the meds would mess my IBS up even more so I'm on the meds for life even after the surgery. The NF is not a 100% guarantee surgery, but from my research has a higher success if people are having breathing problems. I have had some bloating issues on and off post-surgery. I'm really not entirely sure if it is the NF or the IBS at this point. I cannot vomit either and have some intermittent nausea too so that can be unpleasant. I had a very experienced surgeon. I think that made all the difference. My wrap is tight enough that the acid isn't coming up, but I am able to belch occassionally to get a bit of air out. There are many posts on this board with people who aren't as happy with the wraps long term, but with my health issues, I think the side effects are outweighed by the being able to breathe again.
Thank you so much for sharing your story with me.
I also have never had irritation of esophagus during whenever I had an endoscopy, but the very first endoscopy showed gastritis and erosive duodenitis.
Also when I first saw ENT I had readness irritaion of the throat, he is the one who suggested Nexiun twice daily, but he said to stop after 8 weeks, but each time I tried to stop the stomach burning came back, so I have been on twice daily nexium for over a year now.
I believe the iron that I take is causing me more problems, I even got and found a natural form of iron from the health food stores, but now after a week the hoarsness in the voice and tightening of the throat is back. and when that happens scares the hell out of me.
I don't have a cough or breathing issues as such.
But I have to try proper diet and see how I get on, also need to sort my enometrisos as well, which is another chronic condition.
I don't think they have Kapidex here in the UK.
I will have to go back and see my ENT again, it was a year ago since I saw him. He is really clued on.
This burning mouth is really bothering me now, and I know both reflux and anemia can cause this.
I believe I will finally have the Op, but I need to resolve my other issues as well.
Thank you again, and wish you all the best.
My docs have always been up front that the PPI's were a lifelong thing with the severity of my symptoms.
I am under the theory that when the body is stressed by one thing, we become more susceptible to other things. I've had HBP for years. Post-Nissen, my BP has gone from 140/90 treated to about 116/65. I've had fewer sinus problems too.
Last edited by MountainReader; 07-13-2009 at 09:29 PM.
So I'm on day 7 of being off my nexium. I didn't have any symptoms for the 1st 3 days off of it. So I guess it takes 3 days to get out of your system... Or it takes 3 days for the acid to damage my throat. Now I feel like some one has used sand paper in my throat. I have a major increase in mucous and am back to clearing my throat all the time.... man I'm miserable. I hope this pH test will tell me something. Only 4 more days until I can start my nexium back... Then it'll probably take a week for my throat to heal.....