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Old 10-07-2010, 08:09 PM   #1
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Dexilant twice a day--is it worth it?

Today my Gastroenterologist put my on Dexilant 60 mg twice a day.

My History:

I've had reflux diagnosed for about 10 years. I've been on Dexilant once per day for a couple years. Prior to that I was on Prevacid Solutabs 30 mg twice per day. The Dexilant has the same active ingredient as the Prevacid and the dual delay time release of the Dexilant gave me similar dosages with a once per day administration which I have enjoyed. I had the same results on both. (I've been on all PPI's on the market and this worked best for me.)

I had a Nissen Fundoplication in 2008 that worked immediately and that current testing shows is still intact. I have slept on a 6" slant for years and watch my diet also.

Over the last 3 months, I developed another chronic cough and some asthma problems. Multiple approaches to treatment failed to work. I had an Endoscopy that showed no damage. I had an upper pH test that I took while I stayed on my Dexilant and Pepcid and it came back horrible. This probe measured aerosolized pH in the oropharynx. It is a pH test that is new on the market to measure reflux in the gas form in the upper throat. Despite my surgery and medications, I had 102 incidents of acid reflux making it up past my vocal cords. One incident registered for 56 minutes. The normal RYAN score upright is <9.41 and my score was 106.17. The normal supine score is <6.8 and I was at 47.56. (literally 46% of my night I had reflux in my throat despite sleeping on the incline, taking meds and not eating for hours before bed.)

I saw my ENT who did the pH test today who said I was already doing everything possible for my reflux and who wants me to focus on some breathing exercises to help with the cough. Frustrating because I was already doing all that when my cough set in and while I've been chronically coughing over the last 3+ months. I happened to have an appointment with my Gastroenterologist today as well. He confirmed my EGD was normal, but when discussing the pH test, he recommended adding a second dose of 60mg Dexilant. He isn't sure if he can get insurance approval, but he gave me a month of samples.

In my view, taking 2 60mg Dexilant is equivalent to taking 4 of most other prescription PPI's. I've never heard of anyone else on a regimine this high. While I really want some relief because of how my reflux affects my breathing and coughing, I worry about what the high dosages of PPI's are doing to my body. Any of you know anything about taking PPI's in such high dosages?

Last edited by MountainReader; 10-07-2010 at 09:56 PM.

 
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Old 10-07-2010, 08:24 PM   #2
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Re: Dexilant twice a day--is it worth it?

MountainReader,

That IS a very high dose. The thing I'd most worry about at that dosage is vitamin defiencies. I currently take 30mg daily of Dexilant, and struggle to maintain my vitamin/nutrient levels, esp Potassium/Magnesium(while taking suppliments).

If nothing else is working for you, I'm not sure what choice you have.

Michelle

 
Old 10-07-2010, 09:58 PM   #3
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Re: Dexilant twice a day--is it worth it?

Thanks IndianMist,

I've added some additional supplements to my regimine, but none of my docs seem inclined to test for nutrient depletion other than my iron.

You're right in that I'm not seeing another real choices right now. I guess that is part of my frustration.

 
Old 01-21-2011, 03:20 PM   #4
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Re: Dexilant twice a day--is it worth it?

On the 22nd of October I was on my way to work when sudden and severe abdominal cramps started. As soon as I got to work severe diarrhea set it. Additionally, after the fourth or fifth trip to the men’s room I noticed rectal bleeding had also started. All of these symptoms continued to increase in intensity and frequency all day Friday (22 October). By Saturday morning the symptoms were extremely severe to the point I went to the emergency room at Mount Carmel East.

The attending physician Dr. Williams did a multitude of tests, then came in and told me I had colitis and also strongly recommended a colonoscopy. He provided prescriptions for antibiotics (2) and for pain (1).

Five days later the nausea was so severe I again went back to the emergency room (28 October) at Mount Carmel East and the attending physician provided a prescription (2) for the pain and nausea.

The symptoms (nausea, dizziness and abdominal pain) decreased in intensity and frequency during the time I took the antibiotics. But, the day after the antibiotics were gone these symptoms started to increase gradually in frequency and intensity. During the time between the second and third trip to Mt Carmel ER these symptoms would some days be extremely severe other days they were “bearable”. That was until 22 November – the (nausea, dizziness and abdominal pain) AGAIN BECAME UNBEARABLE. So, on 23 November, I again went to the Mt Carmel ER and was again treated for these symptoms. The attending physician provided prescriptions (2) dizziness and nausea.

MT CARMEL EAST
(23 October, 28 October, 23 November)
(Co-Pay $30 x 3 visits to ER = $90.00)
(Co-Pay 7 prescriptions x $9.00 ea = $63.00)
6001 E Broad St
Columbus, OH 43213
Ph: (614) 234-6000
Fx: (614) 234-6498 (records - before 4:00 pm)

All during the above dates and times (starting immediately after the first trip to the ER ) I tried to find someone who could do a colonoscopy. Finally, on the 26th of November I was able to schedule a colonoscopy through Dr. William Morris at the Newark Medical Center (a 50 mile drive from where I reside). Prior to this procedure I was required to purchase several items for the bowel preparation procedure. These items included: ClearLax (2), Fleet Enema (1) and Dulcolax 5 mg laxative tablets (1).

The procedure was ATTEMPTED on 3 December. When Dr Morris came to the recovery room, he stated: “sorry you got the short end of the stick – you were just to full of poop!” (That is a quote!) it took two threatening emails and a certified letter (returning the bill from the medical center) to get a response from him. His letter basically stated that I was too constipated to complete the procedure and “he would be happy to reschedule me).



NEWARK MEDICAL CTR
(3 December)
(Colonoscopy done based on Dr Williams first ER visit and Dr Gora second ER visit)
(Co-Pay 1 colonoscopy x $25.00 = $00.00 -- returned the bill to Dr Morris)
(Out-of-pocket for bowel prep items:
ClearLax 2 ea @ $14.38 = $28.74
Fleet Enema 1 ea @ $18.96 = $18.96
Dulcolax 5 mg laxative tablets 1 ea @ $3.40 = $3.40
Total bowel prep materials: $51.10)
The Medical Center of Newark
2000 Tamarack Rd.
Newark, OH 43055
Ph: (740) 522-7800
Fx: (740) 788-6002
(c/o Dr. William Morris)
110 North Galway Drive
Granville, Ohio 43023
Ph: (740) 587-4300
Fx: (740) 587-4306

All of my symptoms (nausea, dizziness and abdominal pain) continued after the failed colonoscopy. My pain medication was almost gone so I scheduled an appointment with my primary health care provider Dr Hurm. Dr Hurm examined me, suggested I try and get another colonoscopy scheduled and provided me a prescription (1) for pain medication.

Dr. Thomas J. Hurm, DO
(Follow up with primary care provider and Rx for nausea medication)
(13 December)
(Co-Pay 1 visit x $12.00 = $12.00)
(Co-Pay 1 prescription x $9.00 = $9.00)
c/o Westerville Family Health
477 Cooper Rd
Westerville, OH 43081
Ph: (614) 898-5690
Fx: (614) 898-5696

I managed to get an appointment at the VA center here in Columbus with a gastroenterologist (Dr. Richard Mayhew) which is required by the VA before a colonoscopy is done. The Dr. Mayhew examined and questioned me and based on his decision I was scheduled for a colonoscopy on 3 January. Additionally, he provided me prescriptions (3) for pain and bowel preparation materials.

Chalmers P. Wylie VA Ambulatory Care Center (Dr Richard Mayhew)
(December 22)
(follow up to with gastroenterology to schedule second colonoscopy)
(Co-Pay 1 visit x $15.00 = $15.00)
(Co-Pay 3 prescription x $9.00 = $27.00)
420 N. James Rd
Columbus, OH 43219
Ph: (614) 257-5200
Fx: (614) 257-5644

Finally, on 30 December the frustration and anxiety with having to go to the emergency room and NOT get “fixed”; the frustration with having to go to the doctor, the VA Center and STILL NOT get “fixed” and all of this had been going on for OVER TWO MONTHS WAS WEIGHING VERY HEAVILY ON MY MENTAL STATE OF MIND.

The next day I woke up and started recalling some details that I had not really paid attention to. One, this all started only approximately an hour and a half after taking my daily dose of Dexilant. Also, more importantly, while I was home for the Christmas holidays I totally forgot to take my Dexilant AND I had no symptoms while I was not taking the Dexilant. Based on this recall, I got on the Internet and researched the side effects of Dexilant and I discovered that every one of my symptoms was listed. It was at that point in time (31 December) I made the decision to stop taking Dexilant.

I have not experienced one symptom since the day I stopped taking Dexilant!!!!!!!!!!!!!!!!!

 
Old 01-21-2011, 06:01 PM   #5
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Re: Dexilant twice a day--is it worth it?

Quote:
Originally Posted by MountainReader View Post
Today my Gastroenterologist put my on Dexilant 60 mg twice a day.

My History:

I've had reflux diagnosed for about 10 years. I've been on Dexilant once per day for a couple years. Prior to that I was on Prevacid Solutabs 30 mg twice per day. The Dexilant has the same active ingredient as the Prevacid and the dual delay time release of the Dexilant gave me similar dosages with a once per day administration which I have enjoyed. I had the same results on both. (I've been on all PPI's on the market and this worked best for me.)

I had a Nissen Fundoplication in 2008 that worked immediately and that current testing shows is still intact. I have slept on a 6" slant for years and watch my diet also.

Over the last 3 months, I developed another chronic cough and some asthma problems. Multiple approaches to treatment failed to work. I had an Endoscopy that showed no damage. I had an upper pH test that I took while I stayed on my Dexilant and Pepcid and it came back horrible. This probe measured aerosolized pH in the oropharynx. It is a pH test that is new on the market to measure reflux in the gas form in the upper throat. Despite my surgery and medications, I had 102 incidents of acid reflux making it up past my vocal cords. One incident registered for 56 minutes. The normal RYAN score upright is <9.41 and my score was 106.17. The normal supine score is <6.8 and I was at 47.56. (literally 46% of my night I had reflux in my throat despite sleeping on the incline, taking meds and not eating for hours before bed.)

I saw my ENT who did the pH test today who said I was already doing everything possible for my reflux and who wants me to focus on some breathing exercises to help with the cough. Frustrating because I was already doing all that when my cough set in and while I've been chronically coughing over the last 3+ months. I happened to have an appointment with my Gastroenterologist today as well. He confirmed my EGD was normal, but when discussing the pH test, he recommended adding a second dose of 60mg Dexilant. He isn't sure if he can get insurance approval, but he gave me a month of samples.

In my view, taking 2 60mg Dexilant is equivalent to taking 4 of most other prescription PPI's. I've never heard of anyone else on a regimine this high. While I really want some relief because of how my reflux affects my breathing and coughing, I worry about what the high dosages of PPI's are doing to my body. Any of you know anything about taking PPI's in such high dosages?
what's the name of the test? i think in my case the acid goes up to my nose cause i wake up congested and have a red oropharynx, i'm surprised i have 0 cough and you do and that your vocal folds get inflammed but mine (so far) don't, i probably asked you this before (i have a horrible memory) but is the back of your larynx swollen? because if your reflux is worse than mine it should be since its the part that's closest to the esophagus so the acid will more likely attack that part first and then the vocal folds i don't see how it could skip that part and go straight to your v.folds, this disease is so puzzling, i don't get it why if you had the nissen the acid still reaches your throat, plus your are on meds and are doing everything you are supposed to, this thing defies logic

Last edited by neptunian808; 01-21-2011 at 06:02 PM.

 
Old 01-21-2011, 06:56 PM   #6
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Re: Dexilant twice a day--is it worth it?

I had an acid reflux that went all the way up to my nose at bedtime during the night and it was just a one severe reflux which caused a lot of damage to my tissues already. My nasopharynx and larynx are all inflamed which include my vocal cords are red. I do not have any cough, but some LPRD do. I don't think I would up my doses so high, unless the person have an erosive esophagus. People need stomach acids to digest food too, taking high PPIs will eliminate all your stomach acids I think. There are several studies saying that taking long-term periods or high dosages of PPI can develop osteoporosis and hip bone fractures as well as other infections. The study say people need stomach acids to kill bacteria and germs, so if the person uses PPI too much they can expose themselves to infections. I am just going to use the PPIs until my erosive esophagus heals, but I am not sure about my throat.

 
Old 01-21-2011, 07:15 PM   #7
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Re: Dexilant twice a day--is it worth it?

It is what you are putting inside your body, just to let you know. The most I would try to take for LPR and not GERD would probably be 2 dosages.

Last edited by tofumix; 01-21-2011 at 07:21 PM.

 
Old 01-22-2011, 12:25 AM   #8
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Re: Dexilant twice a day--is it worth it?

LPR is strange because there are so many different symptoms for it and everyone's body reacts so different.

I often get irritated vocal cords and hoarseness. Not always though. I don't typically have a lot of other redness or if I have, the doctors don't mention it. They are usually more concerned about my lungs and breathing problems from the acid. It is way scary frequently not being able to get a good breath and it wears you down not getting the oxygen you need over a period of months.

I've had 3 pH tests, 3 endoscopies and some vocal scopes over the last several years. They have been fairly consistent. I come back with extremely severe acid reflux readings, way abnormal even for people in need of reflux treatment. Ironically, my EGD's have shown no damage to my esophagus at all, thank goodness. What the tests, and a couple of barium swallows, did confirm was that I have acid coming up and irritating my lungs, sometimes being aspirated, and irritating my throat.

Manometries have shown that my esophageal sphincters are not functioning well at all. This allows the acid to come up. The nissen fundoplication I had did help. They wrap your upper stomach around your esophagus and stitch it in place. This results in your stomach contracting around your esophagus to help do some of the job that the LES should do. They can't wrap too tight though. We need food to go down. Because of that, it allows for acid to still come up at times. Because of the severity of my acid problems, I never actually went off of, or reduced, my PPI's even post-surgery. I could tell when I woke from surgery that it had helped though.

The most recent pH probe I had was just an upper probe. The probe and computer are by a company called Restech. The machine is called Restech Dx-pH Measurement System and it was released in 2008. It measures pH in the airway. Until this was developed, probes couldn't detect reflux in the airway because esophageal pH catheters only measured liquid reflux. Reflux that comes up into the esophagus is called superaesophageal reflux and it is typically in a gaseous form. The new type of probe used with this system is able to sense reflux in a gaseous form. It has a completely different scoring system than the other pH tests and has a lot of research around it. I had this particular pH test at my ENT's office. My other regular pH tests were through my GI doc.

With the Restech probe, an upright pH of less than 5.5 results in a normal RYAN score of <9.41. My score was 106.17. Supine scores with pH 5.0 have a normal RYAN score of <6.8. Mine was 47.56. Just one of my nighttime reflux events actually lasted 56 minutes and I was sleeping on an incline and hadn't eaten for about 4 hours before sleep and was taking a nighttime dose of Pepcid at the time. I actually had reflux up in my upper airway below pH 5.0 46.16% of the night. Ironically, I was feeling pretty good on the day of the test and had very few symptoms. My flare was much worse for months before I actually had the pH test done.

The frustrating thing is that even with the severity of the reflux confirmed by the test, my ENT, GI doc and Pulmonologist all told me I am "doing everything right" and they all said there really wasn't anything new I could try to help because I've tried everthing they have to recommend and they all feel I'm on a pretty good treatment plan with the right kind of lifestyle changes.

As for the bacteria thing, my Gastroenterologists recommend probiotics. You can take the ones over the counter. They also recommended VSL3. It is a "medical food". They also have a prescription version called VSL3 DS. It has billions of the probiotic elements that help keep your digestive system functioning well. I really liked it, but it is more expensive.

I do worry about the long-term chances of osteoporosis, but it is very important for me to be able to breathe so I'm taking my chances until I can find some other "magic" fix for my acid problems.

By the way, I've had ZERO side effects from Dexilant....Nexium is a whole other story though. That one tore my guts up.
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Asthma, Allergies, severe LPR/GERD, TMJD, Hearing Loss, Ulnar Impaction Syndrome, Shoulder Impingement, Plantar Fasciitis, DeQuervains, Hypermobility, possible Ehlers Danlos Syndrome

Last edited by MountainReader; 01-22-2011 at 12:26 AM.

 
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