High doses of Nexium?
I finally met with Dr. David Armstrong (supposedly the top reflux expert in Canada) at McMaster hospital in Hamilton.
I have been having constant heartburn since Feb. 2007, with not much relief from PPI's (Nexium, 40mg two times per day) plus other various meds, e.g., stomach flushers, acid blockers, and low dose antidepressant (amitryptylene). Both endoscopes showed no damage, biopsies showed no problems, my Ph on meds showed Nexium is working, and my motility was fine, specifically LES pressure, more tight than loose. (Dr. said motility tests vary just like height and weight in human beings).
For the most part, the doctor does not think I have GERD. Twenty-four hour a day heartburn doesn't supposedly present like GERD, and he asked me questions about skin sensitivity, cold sores (herpes virus), and sleeping problems (all of which I have). He actually asked me alot more stuff about allergies and any blood work I've had; he was very thorough.
He says he wants to completely "attack the pain" so my body can begin to realize things have healed and it's no longer necesssary for my brain to receive pain signals (something like this). He seems to be a very knowledgeable doctor, and had alot of patience in talking to me and my husband.
He wants me to take 40 mg of Nexium, 4 times per day and sulcrafate 4 times a day and to stay on the amitryptylene for 3 months, and avoid any food that I think causes me problems. If, at that time, I'm still having difficulty, he will do another endoscope, biopsy me throughly, and put in the 48 hour Bravo capsule.
I asked him on or off meds for the capsule?...and he said he wasn't sure yet. I also asked him about impedance testing, and he said we don't have access to that test in Ontario...yet.
I'm a little hesitant to take that much medicine, however, in Ontario, we don't have the option to go for second opinions (a severe shortage of doctors and specialists!). My husband wants me to think positively, trust this specialist (he does have excellent experience with the esophagus), and take the meds...
Anyone else have a situation like this...or have taken this much medication? I have no other symptoms of GERD except for the heartburn, sometimes throat burn as well, and sometimes a lump in my throat. No reguritation. I also never had heartburn before Feb. 2007, but I had insomnia for 2 years prior.
Sorry for such a long post...these problems are just so frustrating...
I think it's interesting about your doctor trying to find a way to let your brain know that there is no need to produce pain signals. Maybe that's the right approach. However - and I recall you mentioned some time back, a doc wanting you to do 40mg Nexium 4 times per day - what basis does Dr. Armstrong have to recommend 160mg Nexium per day? Myself, my throat turns to sandpaper on 80mg of prilosec, which is very similar to Nexium. I literally can't imagine 160mg of Nexium. I would be cautious of this regimen. If you plan on doing it, maybe titrate up to 120mg for a while and see how that goes before trying 160. That's just me though, because the idea of 160 just kind of makes me wince.
I'm no doctor, but if I were to try to conjure up an experiment, I believe I would try a "Maalox cocktail" and see what happens with that before trying tons of Nexium. The Maalox cocktail is Maalox plus lidocaine. It gives temporary relief from severe heartburn. some of the gi's prescribe it. Have you tried that at all yet? I just wonder if something like that could interrupt your pain cycle and put a stop to it. I would think that if a Maalox cocktail does not help at all, then no amount of ppi's would possibly help.
Have you tried a vacation? Are you in a position to try that?
Sorry for the relentless pain....I do pray you will find relief very soon.
Hi Angelabo I was wondering how you would make out with the specialist . I tried 3 nexium for a brief period when high PPI dosing was all the rage. I may have even tried 4 for a couple of days . My memory fails me because it was in 2002 . I was so frustrated with the constant earache for weeks straight , and my GI in his words told me i could take as many PPIS a day i wanted . He prescribed me enough PPIS to take care of an army .
It just about ruined my bowels which have never been the same since . I had really bad diahreaha and other bowel and stomach symptoms. I felt horrible too , my body as a whole felt horrible and i got more GERD symptoms than i had to begin with . I settled on 2 a day which helped in my case. Everyone is different, some can and some can't tolerate high doses at all. It's trial and error. As Mark suggested , i would ease into it.
We had one on the board who took 5 a day , i don't remember who . Tom Carver took 120mg of Prilosec & 300mg of Zantac per day
I also remember another girl Rhonda who took 3 nexium a day. with some initial releif of symptoms. She got a second opinion at the Cleveland Clinic with Dr Falk and he cut her back saying less is best, if i remember correctly. He put her on 2 and told her to take them with food , instead of a half hour before and she saw dramatic improvement.
Every doctor is different , but i thought the present consensus is less is best . I didn't know that had changed and doctors were still prescribing high doses. I guess opinions , treatments , theories keep changing with GERD .... and it depends on the doctor. Personally i would want to cut to the chase , and have the tests repeated immediately , but i understand your dilemma Take Care and Good luck . .
Thanks Tricia and Mark for your replies.
Mark: I have tried the Malox cocktail and it does give me relief for a short amount of time. Also, the "Canadian" gaviscon that's been discussed also gives me fair, although brief, relief.
I am indeed concerned taking that much Nexium. When I asked the doc about tolerating that much, or what possible side effects to watch for, he said "probably nothing, it's very well tolerated," however, he did say I could cut them in half and space them out during the day, so I still take the same double dose, but spread out 4 times per day. I will definitely play around some before I jump to 4 per day.
I have not yet found the carafate/sulcrafate (whatever the name) too helpful. I am to take it after meals, but I assume I shouldn't drink water after I've take it, so that I don't dilute the coating. I need lots of water, however, because I've already noticed the carafate is rather constipating. I'm not sure how to contend with that issue. Maybe I'll go back to the Malox cocktail or the Gaviscon.
Tricia: Yes, I would have liked to have more immediate testing. The doctor told my husband and me that he thinks that I'll look back to this time two years or so from now, and think, Wow, that was a rough time, however, I will be completely better. I know I should be optimistic, however, deep down, I feel I have both NERD, plus a hypersensitive esophagus.
I find I have a difficult time discussing my illness with those who ask. Everyone thinks I look great, how can I be sick, maybe this is all in my head...the last part is probably what they're thinking. No one seems to totally understand the quality of life issues here at play. I guess I shouldn't care what other's think.
I'm just wondering if the doc thinks that, if after 3 months of Nexium 4 times per day, I don't have improvement, or that I do have improvement, that either I don't have NERD, or I do??I'm just not sure what this "experient" will prove. I guess if I start feeling better, that is the main key.
I was reading your post and remembering my own experience with horrible LPR and then heartburn, etc., that was a little more than two years ago...now i am pretty much symptom free and have returned to a normal diet, etc. I think you just need to be patient and this thing will subside. Do the ppi's but gradually you will probably be able to wean off them. For me stress had alot to do with my symptoms; it did take about a year a two months for the symptoms to subside; but while i was having them i was totally beside myself with all kinds of horrible symptoms, larygeal spasms, horrible breathing problems, chest pain, you name it. i had good doctors who did all the tests including impedence, ph tests, endoscopies, yadda; but GI refused to even consider surgery in my case; surgeon said to me, if its still bothering you in five years, come back and we'll re-test. But symptoms did go away; you just have to be patient; bodies do change and heal. good luck...
Thanks Timbrado, for your positive encouragement.
I guess I just have to realize that the most important goal is to try and relieve the pain. I'm just so hooked right now on "getting a diagnosis," however, even if I get a diagnosis of GERD, or more specifically, NERD, my options of treatment end up remaining the same.
I am at the top of the doctor pyramid right now at McMaster, in the Digestive Diseases Clinic, and in Ontario, there would be no one else to see who would be more specialized than the doctor I'm seeing.
I know I will eventually get as much testing as is necessary, and the doctor is willing to do it in time.
I do agree that I wouldn't immediately do surgery unless all my testing and symptoms warrant it, and even then, I would try and be patient to get my symptoms under control, only considering surgery as a very final option. It seems to be common to most people that the path of figuring out this "disease" is, usually, a long one.
I'm basically going to try and trust my doctor, as he's the best and really the only one I've got right now, and with my gut instincts, I feel he is very competent. I will take the high level of meds for the amount of time he wants (so far no bad side effects), follow my lifestyle modifications, take the amitryptylene, which may help me heal, and makes my life more liveable, as it really helps me with my severe insomnia, and then see him in 3 months for testing, if necessary.
Thanks again for the helpful and sympathetic support from this forum. Angela.
Out of curiosity, why did your GI emphatically say no surgery for you. What did the consensus of your tests show as far as amount of acid and duration of acid episodes? Was your endoscopy clear? Were you on meds when you had the tests?
Are you off the acid meds totally or do you still take occasional acid reducers?
I guess if you are having transcient Les relaxations because of stress or lifestyle, I think it could improve with changes. But I don't think if a person has a mechanical weakness at the Les junction that it can change. Certainly diet and stress management can help but if there is a hiatal hernia or other malfunction, I don't think it gets better without intervention of meds or surgery. I could be wrong...thanks for information.
I just want you to know that i had horrible pain; my pcp thought i was having angina, and even, on one visit gave me a bit of nitro; so getting rid of it was the priority; i went through all the tests; reflux is a very strange thing; it does present rather "catastrophically", or at least it seems to. that is how most of us experience it with sudden dreadful onset. But reflux is more complicated and subtle; you need to figure it out and work it out in a sort of artful way; doctors are not always so helpful; and surgery is not alsways the answer, unless you have a para-esophogeal hernia or someting like that. I think that once you get a handle on it, and don't panic into taking drastic measures like getting a surgeon to operate on you, should also be a priority. The big thing is to be patient; do the tests; do ppi's, and work yourself off them if you can; it willbe fine;
I have great doctors; go to great university medical school clinic; my tests could be read in different ways; but mostly everything was fine; but this didn't jive with the pain, and with the ENT who could see my larynx was swollen and red; my GI is sympathetic and she understands that this stuff is way complicated, and that there is, in the traditional nomeclature of medicine, an "idiopathic" aspect that is overlooked in th age of HMOs and all that; some research suggests that the tiniest changes in enzyme receptors changes they way esophageal tissues experience even normal levels of acid;
as far as malfunctioning lower esophogeal sphinctre, we need to distinguish between what we read through medical/clinical discourse, and what might actually be happening; you know what i mean? you never heard of a transiently loose lower esophogeal sphinctre, or of a esophogeal sphinctre, until you started obsessing on these symptoms, and then reading this endless supply of online medical discourse that gives some medical mumbo jumbo how you can think about what you are feeling; it's like you go to a dermatologist for this pimple on your nose that you've been thinking abou for the last five months, and she's more concerned with the dark spot on your back you can't see; so before you fly off to seattle to see a doctor who does hills instead of nissens, i think its really important to just chill, and get the information, and chill some more....
as far as ppi's; i still take them as prns, but i have gradually weaned off them without any problems....but gradually!