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Here is my “canned” post on reflux from a 19 year survivor of Stage 2 EC. There is no guarantee it will work for everyone, but it’s worth asking your doctor about it. I had reflux for years before surgery, but it seemed to have disappeared afterwards. I was a happy camper for a year. Almost exactly one year later, I woke up with reflux from hell. Full blown aspirative reflux for 2 hours of gagging, throwing up, choking, coughing, gasping for breath. Many, if not most, of us know the feeling. Nothing helped. I was on every prescription and over the counter drug; trying suggestions from others including popcorn, apple cider vinegar (which was like throwing gas on a fire!); and every other idea from folks on ACOR, and FB. Nothing worked. I had a reflux incident a couple time a week, and one of the aspiration disasters every couple of month.
After dealing with reflux for years after surgery, I was given a suggestion by a general surgeon that actually worked! He had a couple of patients who never had EC, but required an esophagectomy. Both had reflux so bad they ended up in the hospital several times a year with chemical bronchitis and pneumonitis. I had been going through the same thing for years after surgery, but not so badly as to require hospitalization. He wrote a script for 250mg of Erythromycin taken 4 times a day. That was in July 2017 and I have been reflux free ever since!
The bad news is that what started out as a cheap fix - my first couple of prescriptions for 3 months were only $40 or so - suddenly jumped to $470 for a 1 month supply after the beginning of the year. We looked around and found Walmart was the least expensive, but it was still $330 for a month. Happily, last month (January 2018) it had dropped to $230, and this month $217. I have also gradually reduced the intake to 2 pills a day, once after lunch and one after dinner. That seems to be working as well as the original 4 per day.
We are not ready to quit the Erythromycin, so we pay the price. But I can’t tell you the joy of going to bed without worrying about reflux. If I never aspirate bile again...
March, 2018 An update on the cost of Erythromycin. I have just ordered the drug from a Canadian pharmacy at a far cheaper price than I was getting it at Walmart. I received 300 tablets for $156.95. This is a 5 month supply at a saving of a bit more than $1000! Discovered that ordering Canadian drugs for personal use is legal. You are allowed to get a 3 month supply, but you must provide the original prescription from your doctor, and American Express is the only acceptable credit card. I had the doc write a script for 3 tablets a day, - a 3 month supply was 270 tabs. However, the drug is provided in lots of 100, so ended up with 300.
August, 2019 After 15 years on a Select Comfort bed, we moved back to a regular king-sized bed! I still sleep with head slightly elevated, but that’s more out of habit than need. More than 2 years since going on Erythromycin, I remain reflux free. Even better, the cost of my last prescription was down to $125.
The bad news is that what started out as a cheap fix - my first couple of prescriptions for 3 months were only $40 or so - suddenly jumped to $470 for a 1 month supply after the beginning of the year. We looked around and found Walmart was the least expensive, but it was still $330 for a month. Happily, last month (January 2018) it had dropped to $230, and this month $217. I have also gradually reduced the intake to 2 pills a day, once after lunch and one after dinner. That seems to be working as well as the original 4 per day.
We are not ready to quit the Erythromycin, so we pay the price. But I can’t tell you the joy of going to bed without worrying about reflux. If I never aspirate bile again...
March, 2018 An update on the cost of Erythromycin. I have just ordered the drug from a Canadian pharmacy at a far cheaper price than I was getting it at Walmart. I received 300 tablets for $156.95. This is a 5 month supply at a saving of a bit more than $1000! Discovered that ordering Canadian drugs for personal use is legal. You are allowed to get a 3 month supply, but you must provide the original prescription from your doctor, and American Express is the only acceptable credit card. I had the doc write a script for 3 tablets a day, - a 3 month supply was 270 tabs. However, the drug is provided in lots of 100, so ended up with 300.
August, 2019 After 15 years on a Select Comfort bed, we moved back to a regular king-sized bed! I still sleep with head slightly elevated, but that’s more out of habit than need. More than 2 years since going on Erythromycin, I remain reflux free. Even better, the cost of my last prescription was down to $125.
April 2021. Now for the bad news. Erythromycin is an “orphan” drug. We think only one or two companies are still making it and they keep jacking the price up. None of the prescription drug plans cover it. It does not appear to be readily available in Canada any longer. The two batches I got early last year came from Great Britain. The next to the last batch was shipped from Australia, and my last script came from New Zealand. The price for 300 tablets is now up to $300. Still, that’s only $60 a month while the US price is still sky high. Last time I checked it was over 4 times as expensive.
June 2021. Another update. Just called the Canadian pharm for a 3-month refill. Price has gone up a bit more to $311.
Decided to see if Amazon Pharmacy is selling it any cheaper and YES, they are! They are showing Ery-tab 250mg, 3 tabs a day, and a 90day supply for $240 for Prime members. And, showing up how screwed up our medical system is, over $1100 if I use my drug coverage. I will be ordering from Amazon for my next script and will let people here know how it goes.
December, 2021 So much for Amazon. Went in to place my first order only to discover the price had just jumped to a bit over $1000! Went back to the Canadian pharmacy and ordered my regular script for $311.
After 4.5 years being reflux free, while waiting for the drug to arrive from Canada, I decided to try an experiment to see whether reflux was actually being controlled by the erythro or not. I stopped taken the drug.
Four nights later I woke up with the burning and foul taste of reflux! This was the first time in those 4+ years I have experienced this. I started taking erythro again the next morning, and have not had any reflux since that night.
I guess I’ll be on erythromycin for the rest of my life.