Hello to all! This is my first posting, although I have been lurking around here for months. What a blessing it has been to me to be able to read about
the experiences of so many people with similar health issues.
I have quit Nexium, and I have lots to say about it!
First, a bit of the lowdown on my personal saga. I am 50 years old. I have always been strong and healthy. My one big complaint was that I suffered from indigestion. At first is was sporadically, and I so learned to avoid most of the triggers (orange juice, tomato sauce etc...). I have always been a healthy eater. Copius amounts of fresh salads, steamed vegetables and daily trips to the fishmonger and butcher. No fried foods (french fries maybe once a month).
Then last year I started to notice that I sensed mild indigestion everyday. Almost no day went by without some symptoms. I used Gaviscon to treat. I told my gastro doctor and he recommended an upper GI followed by a treatment of Losec. The UGI did not show reflux. The good doctor suggested that it still might be some sort of reflux related issue and put me on the Losec. It worked well, but when I told him that some days I would still feel a little off, he suggested that I try Nexium. He also booked me for a gastroscopy (more on that later).
What a wonderful drug. Symptoms completely disappeared the day I started. The next summer a trip through Italy saw me sipping espressos and eating pasta at will! Red wine could be consumed to my hearts content. Vodka shooters anyone?
Everyone has to pay the piper sometime. My Nexium prescription was costing me $80 per month. I would give the receipts to my wife and she would submit it to her work insurance plan. She got the money back, but somehow it never filtered back to me . Then I discovered that Prilosec OTC was an over the counter drug in the US at $22 per month supply. I figured that it was much better to be out $22 than $80, so I tried the switch.
It appeared to work fine for a while, but 2 things happened to me that caused concern. The first was a rash that appeared on my side above the waist. It looked like shingles. The second was that I began to wake up countless times per night with the most horrible cramps in my calf muscles! My legs have always been a bit squirmy when I sleep, but I would only get a couple of cramps a year. It was then that I started reading online forums to find out if others had the same experiences. Many did. However, I decided to go back on Nexium right away and retire the Prilosec. The cramps diminished, but the brain fog and ringing ears (stuff that I had previously not attributed to the Nexium) resumed.
After reading these forums I couldn't get the notion of quitting PPI's out of my brain. After another week I decided to quit. I bought DGL and apple cider vinegar etc... The firs day off the drug showed no change. The second day, I developed a sour stomach which continued unabated. The third day was so bad I though of.... well you know how your mind goes crazy when you don't feel well. I got an emergency appointment with my gastro. He looked at me square in the eye and said GO BACK ON NEXIUM. He added that even though research was not available on the long term effects of using the drug, he felt the benefits still outweighed the detriments. So I went back on the drug.
It stopped working! I started to have daily sour stomach issues. Mild but always there. Doubling up on the Nexium helped a bit but not entirely. I stayed on like this for about another month until my follow up at the gastro. Now he tells me that maybe there might be other issued in play. He scheduled me to do a PH test (24 down the throat deal) and blood tests to look at gastrin levels and H. Pylori. He also gave me some samples of Pantoloc to see if that would work better than the Nexium.
The next morning I took a Pantoloc, and within 15 minutes I could feel the changes happening in my stomach. All of the acid symptoms disappeared. I was amazed... for about 10 hours. Then the same symptoms came back. I knew then and there that PPI's had stopped working for me, and that I was not going to double and quadruple my doses to try and chase relief.
I felt worse ON THE DRUG, than I ever felt before I started it. I decided to quit the very next day.
Armed with 150mg ranitidine tablets, gaviscon, DGL, digestive enzymes, acidophelous and pepto bismol I decide to singlehandedly beat Nexium. If my reading of the posts at this forum did anything for me, it was to convince me that I didn't have GERD. Most of the GERD sufferers here don't have the option of quitting like this for fear of making their situation worse. My gastroscopy did not show any damage at all, and the only thing noticed was some redness in my stomach.
When I think about it, my father and both of my siblings have always had digestive issues. Could there be another cause to my grief that had nothing to do with hyperacidity or reflux? I began to be sure about it!
The second day off of Nexium was pretty good. I started to feel a little sour before supper. I took a ranitidine, and it kept it at bay. The next 2 days I took ranitidine morning and night, and I didn't feel too bad. I did not have the massive "rebound" that I had the first time, or the alternative treatment was helping. I took a swig of pepto bismol whenever I felt a little burn. I took all of the other supplements before or during meals. Each day since has brought ups and downs. The massive constipation that the pepto bismol gave me didn't help.
Now I am eight days off of Nexium. Last night I took a Pepcid AC over the counter pill, and for the whole day I maybe consumed 6 or 8 regular strength Gaviscon. Today I have taken nothing. Today is the first day that I feel almost normal!
Overall I was on the PPI's for about 15 - 16 months. I have learned a lot! I am sure that my indigestion will return to the way it was pre Nexium, but I will attempt to find a solution instead of trying to mask it. For all of you that don't have the same options that I did, I certainly feel for you. You have to live with the lesser of evils. Be strong. For those who have been thrown to the Nexium wolves without a definitive reason, please heed my advice and flee. The rebound can be controlled, and it will get better with time.
I tried to find posts where other people who have quit PPI's could elaborate on how long it took for the rebound to lessen. I found precious little. Hopefully others will find this ridiculously long account and take heed. YOU WILL FEEL BETTER WITHIN A WEEK! Maybe not all the way better, but a great deal better. Just make sure that you don't allow your esophagus to be injured. Take some H2's for a while and drink the pepto bismol.
Eight days off of Nexium and the ringing in my ears is just beginning to abate. My nightime squirmy legs has not stopped, but the feeling that I am about to cramp up has. Of paramount importance is that my mental health is returning. The acid issues that I had (heartburn?) while on Nexium had me believing that something else was wrong. Those acid issues disappeared the day I stopped the Nexium. The sour stomach due to acid has been better each and every day.
I hope I have not abused my posting privileges by telling such a long story on my very first post. I also hope that my experience can be of help to someone else, as this forum has been such an inspiration to me.