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Trying to get off Nexium

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Posted 8/4/2010 5:09 PM (GMT 0)
June 21 was the day I began a regimen to get off the Nexium Rollercoaster. the recommendation I had was to do this in 1-1/2 week progression. Every other day, then every 2nd day, every 3rd day, each for a 1-1/2 week period. I am now at the "every 5 days" and miserable. The burning in my throat is awful and taking DGL, drinking water, eating celery, etc. aren't helping. I'm actually looking forward to taking the dreaded purple pill tomorrow. I want to get off the PPI but not sure if I can. I've read many articles, etc., that indicate it's best to NOT take it, but...

BTW, it's not just at night anymore when I have the burning sensation. Happening more frequently during the day and not even connected to eating.

Any advice would be welcome, especially now.
Posted 8/4/2010 6:02 PM (GMT 0)
Hey,
Have you tried using organic ACV? I usually took that (diluted in water) after meals. I also take a dgl pill, 20 minutes before eating. I usually eat 5-6 meals a day and usually just one serving of fruit/vegetable/meat. I stick to a low carb diet, with lots of fruit and vegetables which seems to help. I drink aloe vera juice when my throat feels sore and that typically helps with the inflamation.

I don't have heartburn anymore, but struggle with ocassional swallowing problems and mucous on my throat. Honestly, I don't know if it's working, but I'm living through this. I guess I won't know until I do another scope to see if there's damage... I'm hoping not, since I don't have heartburn, but who knows. The funny thing is that I feel just as good now as I did on my medicine. I'm starting to think that I'm not refluxing acid, but bile? Whatever I'm refluxing, it's causing my swallowing to be odd at times.

I'm starting to think that the ACV and other treatments don't work if you have too much acid. I think it works for me because I don't have enough...

What makes you want to stop the medicine?
Posted 8/4/2010 6:26 PM (GMT 0)
Thanks for your advice. I'm going to try some of your suggestions. The weird thing is that I never had a scope done. I was "diagnosed" with acid reflux many years ago after being in the emergency room from many symptoms that scared me, thinking I was having a heart attack. One pill stopped all the symptoms so I was told to take Nexium. I know now that a ppi can cause other problems. Not unexpectedly, I'm going through the many withdrawal symptoms. Today has been the worse day so far, with the burning lasting for hours. Right now, I feel good. Hoping that this will last the rest of the day.

I am a vegetarian (eat fish) and can manage to deal with dietary restrictions as I go through this withdrawal process. I'd like to take something for when the burning hits, but not sure what I should take. Some OTC remedies interfere with my beta blocker (must take for heart problem).

Again, thanks. Any other advice you have would be welcome.
Posted 8/4/2010 6:35 PM (GMT 0)
From what I've read and researched, if you take ACV when you have heartburn, it means that you don't have enough acid in your stomach. If it doesn't help and makes things worse, you might have too much. I drink lots of water IN BETWEEN meals. Don't drink water while you're eating, as it dilutes the acid and makes the stomach have to create more acid to lower the PH for digestion.

As I'm sure you're aware, everyone will recommend that you go to a GI specialist to get scoped to see if there are any other problems. Also, I don't know what effect those remedies will have on any other medications you're on. You might want to look online for side effects on them.

When I stopped taking Nexium, I did it cold turkey. I can't say whether or not it worked best, but I'm here today. Honestly though, I can't tell you if the grass is greener on this side of the fence either. I'm starting to wonder if it's a lose/lose scenario having GERD
Posted 8/4/2010 6:58 PM (GMT 0)
I've been taking ACV tablets after meals. Makes it easier for when I'm not at home.

I'm realizing now, too, that I need to eat small meals throughout the day which is easy to do. I'm avoiding many of the triggers such as onions, peppers, etc, hoping that will make a difference. I have to keep reminding myself since I love eating all kinds of veggies. With the Nexium, I could eat just about anything. I wouldn't mind having to take some kind of OTC item if there's one I can take.

I have my water bottle nearby and constantly fill it. The water does relieve the feeling. I don't drink during meals anyway so no problem with that.

Your comments are helping. Yes, I know it can be a lose/lose situation but will do my best.

Worst case scenario is having to take a ppi less often than I do now.
Posted 8/4/2010 7:11 PM (GMT 0)
Sorry, I don't mean to be negative about it. It's just a very confusing and painful disease!!! How long were you taking nexium?
Posted 8/4/2010 7:18 PM (GMT 0)
I didn't think of it as negative, but more as an honest opinion.

I've been taking Nexium for YEARS, not sure how many.

Right now I'm eating part of an apple. Special treat that doesn't cause any problems.
Posted 8/4/2010 7:26 PM (GMT 0)
Yeah, Apples are a known holistic cure for heartburn/reflux. Perhaps you can also try to stick to an alkaline diet vs. an acidic one. Some fruits and vegetables are more acidic and may worsen the condition.

I'm assuming that you're laying to sleep with an incline and not eating 3 hours before going to bed?
Posted 8/4/2010 7:29 PM (GMT 0)
I stay away from acidic foods anyway.

The weird thing is that I'm having no problem when lying in bed. Before I went on Nexium, it used to be very difficult for me to sleep wihout propping up my head. I've been pleasantly surprised that I haven't had to do that recently.

I do avoid eating late at night, knowing that can add to the problem.
Posted 8/4/2010 8:25 PM (GMT 0)
Hi DK -
Why do you want to get off Nexium? Up until last year when I had to get surgery because of an accident I was on Nexium since it came on the market and the other ppi's before that, over 25 years. I would be following a doctor's directions rather than just trying to get off it.
Posted 8/4/2010 8:35 PM (GMT 0)
FDA warnings
http://www.foodconsumer.org/newsite/2/other_diseases/fda_issues_warning_about-_ppis_0221.html

Also, there are side effects connected with it. When I was "diagnosed" it was without any special kind of test. Makes me wonder if I ever really had acid reflux.
Posted 8/4/2010 8:41 PM (GMT 0)
Alcie,
You bring up a very important discussion for me. Part of the main reasons why I wanted to get off nexium was due to my age. I knew all the concerns (possible increase in: osteoperosis, pneumonia, stomach polyps, malnutrition) and since I'm only 30, I just didn't feel like I could take the medicine for 30+ years. I have it in my mindset that I won't make it until 60 (ridiculous, I know!). Have you had any tests to determine if any of the malnutrition information is true? 25 years? Any noticeable problems that would deter someone from taking the medicine for that long?
Posted 8/4/2010 9:07 PM (GMT 0)
I had an analysis done of supplements and meds that I take. At the time, the pharmacist who looked at everything said Nexium is much too strong and not something I should take. I always find myself wondering how much the pharmaceutical companies influence what is prescribed. There can be other options including natural remedies.

Too many possible problems with it so I'll continue to do my best to get off it or at least take less. That's what I think is best for ME and I need to be the one to decide for my own health.
Posted 8/4/2010 9:10 PM (GMT 0)
I wonder, too, how much doctors can know about ALL medications. They read and/or listen to the drug reps.
Posted 8/4/2010 9:22 PM (GMT 0)
Dk, if the nexium is too strong for you why not step down to an H2 blocker like zantac?

You really need to see a GI and get tested to see if you have any damage or a weak LES.

I was on PPIs for nearly 10 years. I just developed polyps during the last year of it. My surgeon said they were the safe kind and would fade after I stopped them.
Posted 8/4/2010 9:36 PM (GMT 0)
Hi Joy,
Does that mean that the doctors will start to push surgery after 10+ years on the medicine if you start to grow polyps? I'm really just trying to find out what I should do if I want to make it to 60 years old!!! That's 30 years of ppi!
Thanks,
Philip
Posted 8/4/2010 10:06 PM (GMT 0)
I just read some more about PPI vs H2 blockers. It's interesting to read comments by people who have experienced similar problems. One mentioned that doctors don't always know a lot about what they are advising their patients to take.

www.inspire.com/groups/agmd-gi-motility/discussion/ppis-proton-pump-inhibitors-vs-h2-blockers/
Posted 8/4/2010 10:12 PM (GMT 0)
I was the one pushing the surgery.
When I was 39 I started coughing constantly and it kept getting worse. I had already been on PPI for several years.
I first went to my allergist. He said it isn't allergies. He sent me to a pulmologist.
The pulmologist said, not heart, not lungs, it's gerd. She sent me to a GI.
This process took two years. :(
The GI said, Severe GERD. He put me on stronger meds. It didn't help.
He said surgery or suffer and that the surgery probably wouldn't help me.
I thought about it and found another GI who was a bariactric surgeon with lots of experience.
He said he could fix me. And He did.
Posted 8/4/2010 11:32 PM (GMT 0)
If you're young you don't want to be pushing the surgery. It's major surgery. There are side effects. It's not guaranteed and it probably won't last forever, although the newer procedures are better. I'd rather take the PPIs. I started with Tums, then moved up to the newest things as they were invented. Now there are 24 hour capsules. The old ones only lasted 10 to 17 hours or so, depending on brand.
Posted 8/5/2010 12:23 PM (GMT 0)
Alcie,
If someone young like me is taking the medicine, would you recommend getting any specific checkups throughout the time we're on the medicine? My dr seemed to think that I shouldn't come back unless I feel different. Malnutrition and b12 deficiency seem to be pretty common for long-term ppi use. Did you run into this?
Thanks!
Phil
Posted 8/5/2010 1:25 PM (GMT 0)
Phil - I have lots more dietary trouble post-op than I ever had in 25 years or more of acid reducers of all types. If the acid reducers are working and you have no symptoms there is no reason to pester the doc, as he suggests.

Now, post-fundo I have serious problems with eating any gas-producing foods (bread, legumes, most vegetables), resulting in vitamin K deficiency unless I eat a salad with spinach every single day. I'm hating salads already! And I make really tasty ones. It's just HAVING to eat them.

I could eat anything I wanted on acid reducers, as long as it was not foods containing my allergen - sulfite. That means I couldn't eat most processed foods, and I still can't. But that's not everyone's problem. Still, keeping a food journal is a good idea.

I live in fear of getting sick and throwing up. I hurt something when I took a painkiller a few days ago, threw up blood and now am having reflux again.

So surgery is not a cure-all, and it leaves you with problems you didn't have before. Stay on the PPIs if they are working!!!!!
Posted 8/5/2010 2:23 PM (GMT 0)
I'm actually not taking medicine at all right now and I can't decide if I should get back on them. That's my dilemma. The only real issue I have is that I get a little difficulty swallowing at times. I don't have heartburn. Since I'm young, I'd like to not take medicine unless I absolutely have to, especially because I'm only 30 and I'd like to be able to see my grandkids :). I do get the burps, but I don't feel like anything is coming up (definitely not in my mouth), although I can't see the bottom of my esophagus, so it's hard to tell. I also don't want to risk getting Barrett's, since I'm not taking meds. On the contrary, I don't feel heartburn, so I'm thinking that there's no damage being done.

I'M A MESS!!! Too many decisions...
Posted 8/5/2010 7:36 PM (GMT 0)
DK I'm with Philipkool I believe trying to deal with this the natural way is better for our bodies in the long run. If you hate the taste of ACV you can drink cranberry juice when you feel the heartburn rising. This also helps. New Zealand Manuka honey is amazing too. 4 teasoons of that per day 1 before each meal and 1 before bed is very soothing and healing. Also digestive enzymes. So many of us a enzyme deficient. Taking these has made a huge difference to me.
Posted 8/5/2010 9:24 PM (GMT 0)
If it ain't broke, don't fix it. If there's no pain I'd guess you aren't refluxing acid. Burps are what everyone (except us wrappers) have normally. But when you do need to reduce acid to salvage the esophagus, don't be afraid of it.
Posted 8/5/2010 9:46 PM (GMT 0)
It just boils down to if you're in misery- take the medicine. If the medicine doesn't help- have the surgery.
To me it's the only way to look at it.

Ask yourself...can I continue the way I'm going? It's that simple.
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