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Old 04-26-2010, 06:28 PM   #1
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Stopped Nexium and Acid Reflux

Hello all,

I made a few posts on Rosebloom's thread and I believe my talking about my issues on her thread may have been what had it closed down. I apologize Rose - that was not my intention. So I was going to start a blog but due to my Newbie status, I can not, so here I am with this thread.

I was on Nexium for almost 3 years, 40mg per day. The nexium worked very well for me in regards to my heartburn. A few months ago I wanted to see if there was a way to stop the medication, more because I didn't like to be on medication long term if it wasn't necessary. When I began reading some of the long term side effects, I was shocked. I had several of these symptoms over the past year, including the following:

eye twitch
muscle spasm
joint pain
headaches
carpal tunnel symptoms
extreme swelling of joints
neck pain
swollen collarbone
foggy head
sleepiness
skin eruptions

A few years ago, I had an episode of anxiety. At the time I didn't understand what was happening but have recovered almost completely from that. I thought the symptoms above were physical manifestations of stress (which I learned about through my anxiety). Needless to say, I was shocked to see they were more than likely caused by the Nexium.

I quite cold turkey five weeks ago today. It has not been fun, quite awful actually. I have heartburn every day to some degree and a burning throat. These symptoms are more severe than what I had before I began the Nexium. I am also suffering from insomnia since stopping the Nexium.

I have tried a few different approaches to OTC meds and what seems to work best for me is taking a Pepcid Complete and then some Tums during the day. I tried Zantac but it gave me a headache. Today I tried taking nothing and it was awful. I had to take a bunch of Tums until I had Pepcid around noon.

My question today is that I have also been reading that H2 blockers and some Antacids also have a rebound effect related to them. I realize that right now my body can not just have nothing - it need some help. So does anyone know if the rebound is valid with H2 and are non-calcium based antacids better than the calcium based? I would love to hope that one day I will be free from some or all of this and want to take the meds that will best help me get there.

Today was really awful. I need some hope that this is going to get better. I am so tired of feeling poorly. I am hanging in there, but it isn't easy.

Thanks.

 
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Old 04-26-2010, 07:09 PM   #2
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Re: Stopped Nexium and Acid Reflux

Hello LMF:

I think my thread had gotten quite long and that is why it was closed. I don't think there is much more I can say about my situation. I think I have reached a pleateau. My symptoms are now much better and quite tolerable. I have mild breakthrough heartburn here and there but I can usually fight it off. Today, I had a little bit and I chewed DGL and drank some coconut juice (it seems to work wonders for me). I think it is possible to get through rebound. It just lasts weeks and weeks,or unfortunately it did for me.

I have read there is a rebound effect with H2 blockers but nothing like with PPI's because acid suppression is not as effective or complete with the H2 blockers. I don't think there is a way to get through this rebound without some alternative medication. If Pepcid works for you, then take your Pepcid twice a day and plan to do this for as long as your rebound lasts. You will know when things are beginning to level off because you will, at first, have periods of hours when you feel "normal" and then the hours will extend into days and so on. I now have more good days than bad days, though I occassionally have a bad day for no apparent reason. I have no idea what will happen when I start cutting back on the dose of Zantac from 150 to 75 mg, which I plan as my next move.

I think the calcium based antiacids are better but they can be constipating if you take too many. We are supposed to take magnesium with the calcium to balance it out. I decided it was better for me to take my H2 blocker twice a day rather than take tons of antiacids, which is what I would have had to have done to survive my misery for about seven to eight weeks that this rebound lasted for me.

I agree with you. My symptoms when I initially discontinued the PPI were much worse than before I started taking them. While I only had heartburn before, once I quit the PPI, I had indigestion, constipation, bloating and a lot of upper GI discomfort. Those symptoms lasted for several weeks and then I was left with what I call the "acid attacks" when it felt my stomach was dumping acid no matter what.

Anyway, hang in there. I feel for you because you are now going through the worst of it and it may still last a few more weeks.

Everyone has their remedies. I started drinking coconut juice and find it more soothing and tasty than the aloe juice which would make me nauseous. It seems to act as an antiacid for me and "balance things out." Maybe you can find some (buy the unsweetened kind) and try and see if it helps you. I know different things work for different people and I tried several of the remedies listed by others and they did not work for me, i.e., apple cider vinegar, etc. I know it is a trial and error process.

Hope you feel well soon.

Rose

Last edited by rosebloom; 04-26-2010 at 07:10 PM. Reason: spelling error

 
Old 05-04-2010, 11:32 AM   #3
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Re: Stopped Nexium and Acid Reflux

Hello all,

Rose, thank you for your posts. I always feel some comfort when I read your encouraging words. They are appreciated.

Well I am here at week six off the Nexium. I actually had a few "ok" days last week where I would take the Pepcid Complete and not need any additional antacids. These few good days were followed by one really bad day with lots of heartburn. But, the ok days seem to be becoming more the norm, for which I am thankful.

I have had a sore throat on and off, and a few days of what feels like the beginning of a cold with phglem in the throat. I am not sure what all that is about.

I have also added some magnesium/calcium supplements to my other supplements (multi's, caclium, B complex ).

I hope I am starting to turn a corner. I don't want to jinx myself either.

I will continue to update as I go along.

 
Old 05-05-2010, 07:05 AM   #4
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Re: Stopped Nexium and Acid Reflux

Sounds like you are doing much better than I was at week six off PPI's. I am always glad to read how others are doing, particularly when the news is encouraging.

I still experience episodes of heartburn several times a week (I have good days and bad days I guess) but that may just be what the disease is like for me without the acid suppression of the PPI. I am now three months out of having stopped the PPI so I am assuming the rebound is past or I hope so. Try DGL (licorice) for your throat.

 
Old 05-06-2010, 07:01 PM   #5
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Re: Stopped Nexium and Acid Reflux

Hi all,

Well of course as soon as you say you are feeling well, you have a rough patch! The last few days have not been great with heartburn through the Pepcid and Tums required, despite a simple diet (still no coffee ). I have to keep optimistic that there were some good days, therefore more good days must be ahead.

I have increased my supplements to include 3 Cal/mag per day. The magnesium is 167IU per pill so just over 500IU daily. Lets see if that makes a difference.

I saw my general care doctor yesterday for other reasons. I told him what I had done with the Nexium and how I had been feeling. He said I should report back to him in month. He still feels that the benefits outweigh the risks with the Nexium though and even asked if I wanted a prescription in case I needed it. I truly believe the doctors are not aware of the side effects. Anyone I have told in the medical profession looks at me like I have three heads.

I still feel it is in my best interest to be off these drugs. I hope the damage that has incurred over the past six weeks has been minimal.

Here's to feeling better for everyone.

 
Old 05-10-2010, 05:46 PM   #6
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Re: Stopped Nexium and Acid Reflux

Today is seven weeks off Nexium. I wish I could say I feel great, but I don't. Today was one of those days where the heartburn seemed relentless. This is starting to get me down. It would be so easy to go back to the PPI's as they worked well for me. The two things that keep me from going back right now are the thought of doing this again and the reminders of the side effects I experienced.

I had a few good days last week followed by several not so great days and then a really rough one today. I guess for me the rebound is going into the months....not weeks.

I am not giving up. I will keep you posted.

 
Old 05-10-2010, 07:04 PM   #7
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Re: Stopped Nexium and Acid Reflux

Keep thinking that you are seven weeks out and if you go back to the PPI's, you'll have to start to wean yourself off them all over again at some point.

Today some more information came out in the news about the increased risk for fractures and intestinal infections after taking PPI's for three years. It appears to now be an accepted fact for most of the medical community. This has increased my resolve to stay off PPI's. I am now a little bit over three months and not even sure I am done with the rebound.

The new remedy I am now trying is sipping two tablespoons of apple cider vinegar diluted in water through a straw three times per day. It is not one hundred percent effective but it has helped me cut down on the Zantac. I drink it at room temperature and it is not as bad as I had anticipated.

I am going to continue to try different remedies. I have also read that taking calcium citrate powder diluted in water after meals helps tighten the LES. I may try to find that and try it next. I am going to continue my search for alternative remedies that work.

Don't give up. I was feeling pretty crappy at seven weeks. You have to ride it out for another few weeks before you see improvement.

Rose

 
Old 05-12-2010, 10:00 AM   #8
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Re: Stopped Nexium and Acid Reflux

Rose,

You are a beacon of light and hope in this dark place known as acid reflux! Thank you for your continued support.

I am not giving up - really for the sould reason that I could not go through this withdrawl/adjustment again. There is no way I could subject myself to that.

I bought some DGL supplements to chew - they taste awful! Do you have a brand you could reccomend? I also believe you mentined lozengers - I am in Canada and have not seen them but could get from US. Also, with regards to the Apple cider vinegar, when do you take that?

I am juggling all my supplements timed with Pepcid so they don't counteract. I am also on antibiotics for a sinus infection so I have to time that also.

I am hanging in......

 
Old 05-13-2010, 08:38 AM   #9
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Re: Stopped Nexium and Acid Reflux

Quote:
Originally Posted by LMF123 View Post
Rose,

You are a beacon of light and hope in this dark place known as acid reflux! Thank you for your continued support.

I am not giving up - really for the sould reason that I could not go through this withdrawl/adjustment again. There is no way I could subject myself to that.

I bought some DGL supplements to chew - they taste awful! Do you have a brand you could reccomend? I also believe you mentined lozengers - I am in Canada and have not seen them but could get from US. Also, with regards to the Apple cider vinegar, when do you take that?

I am juggling all my supplements timed with Pepcid so they don't counteract. I am also on antibiotics for a sinus infection so I have to time that also.

I am hanging in......
I buy a brand of DGL that is chocolate flavored and sugar free. The regular stuff is nasty, but the chocolate flavored one is pretty OK to chew. I'll look up the brand name and post it if not against forum rules.

At Rose4Me's encouragement, I began to drink three small glasses of water a day (before meals) with two tablespoons of Apple Cider Vinegar. I sip it through a straw to minimize contact with the teeth. It is not too bad if the water is at room temperature. I am now taking Zantac only sporadically here and there while before the ACV, I was taking Zantac round the clock. Therefore, it is not a cure by any means, but I think it helps balance the PH of the acids in the stomach and/or helps digest food.

I also read that powdered or liquid calcium can help tighten the LES. Therefore, I found a liquid calcium/magnesium/vitamin D3 supplement I am taking morning and night. I figured there is no harm in taking the supplements in liquid rather than pill form and, if it helps, all the better.

Keeping carbs on the low side definitely helps. I think my flareups here recently have been associated with too many carbs on a particular day. I am eating more protein and veggies and less carbs and fruits for now at least.

I will never again have the freedom to eat whatever I want whenever I want like I had while on Aciphex, but it is not worth it if the end result is ending with a hip fracture in five years! I have learned there are no free rides or free lunches and everything, including medications, provides you with a trade off. You get this but sacrifice that.

Hang in there/

Rose

 
Old 05-21-2010, 12:28 PM   #10
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Re: Stopped Nexium and Acid Reflux

Quote:
Originally Posted by LMF123 View Post
Rose,

You are a beacon of light and hope in this dark place known as acid reflux! Thank you for your continued support.

I am not giving up - really for the sould reason that I could not go through this withdrawl/adjustment again. There is no way I could subject myself to that.

I bought some DGL supplements to chew - they taste awful! Do you have a brand you could reccomend? I also believe you mentined lozengers - I am in Canada and have not seen them but could get from US. Also, with regards to the Apple cider vinegar, when do you take that?

I am juggling all my supplements timed with Pepcid so they don't counteract. I am also on antibiotics for a sinus infection so I have to time that also.

I am hanging in......
Hi LMF123, I was going through some of your threads and you mentioned something about throat irritation. I have the exact same symptom after discontining achiphex. I am currently on my 9th week of the ppi rebound and the throat irritation is still there. Thankfully not much heartburn.I have high levels of anxiety due to this and sleep very little. Please let me know how your throat symptoms are and how you managed to keep it under control.

 
Old 05-22-2010, 06:17 PM   #11
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Re: Stopped Nexium and Acid Reflux

Hello Xee,

I had a ridiculously busy week so I didn't get to my week eight update. Monday will be week nine off Nexium and I am feeling much better just in the last few days. I had relentless heartburn as the main rebound symptom. This has eased over the past week. The two biggest changes I have made, and again, I don't know if it is just the rebound finally settling down or a combination of what I am doing. Over the past two weeks I have cut carbs down considerably. I still eat one serving, either bread with a sandwich or a bit of brown rice, plus fruits (apples are tolerated best by me right now). I also started drinking the apple cider vingear (thanks again Rosebloom) twice a day diluted in water. I enjoy a oil and vinegar dressing so I actually don't mind the taste. The last two days (knock on wood), I have had no heartburn at all. I also take cal/mag supplements 3 x per day. Yesterday I actually said to myself, "I feel pretty good" and I don't know when the last time that was (both with Nexium side effects and then the rebound). I hope I have turned a corner.

With regards to the throat irritation, I still have this, more so now at night than all the time. I wake up with a dry throat and of course your mind races and you wonder if it is the reflux throwing a flame into your espophagus. Xee, I suffered from anxiety a few years ago (have you read Charles Linden's book? That book saved me from anxiety and medication and I have not had anxiety like that again). I know how a symptom can lead you to panic and awful thoughts. I keep water by my bed and sip on it. I am usually so tired from my days that I go back to sleep. When it was at its worst, I would suck on lozenges in the night also. For me, as the heartburn has subsided, so has the throat irritation. I have never really suffered from night time reflux so the throat was a concern. I am hopeful that it is getting better as the heartburn is reduced. Try to be calm and not jump to the worst conclusions. If I can answer any other questions, please let me know. I am glad someone other than Rose is finding my comments useful.

Be well.

 
Old 05-23-2010, 10:01 AM   #12
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Re: Stopped Nexium and Acid Reflux

Quote:
Originally Posted by LMF123 View Post
Hello Xee,

I had a ridiculously busy week so I didn't get to my week eight update. Monday will be week nine off Nexium and I am feeling much better just in the last few days. I had relentless heartburn as the main rebound symptom. This has eased over the past week. The two biggest changes I have made, and again, I don't know if it is just the rebound finally settling down or a combination of what I am doing. Over the past two weeks I have cut carbs down considerably. I still eat one serving, either bread with a sandwich or a bit of brown rice, plus fruits (apples are tolerated best by me right now). I also started drinking the apple cider vingear (thanks again Rosebloom) twice a day diluted in water. I enjoy a oil and vinegar dressing so I actually don't mind the taste. The last two days (knock on wood), I have had no heartburn at all. I also take cal/mag supplements 3 x per day. Yesterday I actually said to myself, "I feel pretty good" and I don't know when the last time that was (both with Nexium side effects and then the rebound). I hope I have turned a corner.

With regards to the throat irritation, I still have this, more so now at night than all the time. I wake up with a dry throat and of course your mind races and you wonder if it is the reflux throwing a flame into your espophagus. Xee, I suffered from anxiety a few years ago (have you read Charles Linden's book? That book saved me from anxiety and medication and I have not had anxiety like that again). I know how a symptom can lead you to panic and awful thoughts. I keep water by my bed and sip on it. I am usually so tired from my days that I go back to sleep. When it was at its worst, I would suck on lozenges in the night also. For me, as the heartburn has subsided, so has the throat irritation. I have never really suffered from night time reflux so the throat was a concern. I am hopeful that it is getting better as the heartburn is reduced. Try to be calm and not jump to the worst conclusions. If I can answer any other questions, please let me know. I am glad someone other than Rose is finding my comments useful.

Be well.
Hi LMF123, Thanks for those kind words. This whole thing has been one hell of a roller coaster ride. The throat irritation started as soon as I got off Achiphex.I was on it for only 2 months so I can't understand why its taking so long to get over it. I have to take a gaviscon pill after every meal just to avoid the throat irritation. I sleep with 3 pillows and eat atleast 3 hours prior to bed time. Sometimes I wonder if this thing is really withdrawal or do I have to live with it for the rest of my life. The funny part is I feel a little better every 2 weeks or so and then it gets bad again. Maybe its my diet or maybe the rebound has to cycle itself down to normal levels. Anyway thanks for sharing your experience about anxiety I shall try the linden method. I had already head his tapes but was a little skeptical to try it. Please keep me posted on your progress.It is definitely comforting to know there are others with throat issues due to reflux.

 
Old 05-23-2010, 01:21 PM   #13
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Re: Stopped Nexium and Acid Reflux

Hi to all. I too have been on meds for reflux, since 1994, and Nexium had been working quite nice until I moved to a province where it is not covered as a benefit. I am off work so had to change to Pantoprazole. Not ideal, but better than nothing. I worry that some of you may not be sharing your ordeal with your doctors. I understand the desire to be 'off medication' and I want that as well. Long term untreated acid reflux irritates the esophagus and can eventually lead to throat cancer. Weight gain and certain foods can affect heartburn, as can some medications. I never had it until I was diagnosed with asthma and went on asthma medications, and had a sedentary job where i gained weight. as for "rebound" I know this term is used as relates to narcotics....not sure if it applies to acid reflux meds. if you have acid, and stop the meds of course you may then suffer from acid. I too have the throat irritation now since I can no longer afford the nexium. my voice has changed, this has happened in the past so it is not a surprise, but annoying. but i also know that, for me..., if i am careful with my diet (which, usually i am not) and get out and walk and drink lots of water that my issues are greatly improved. too bad i dont do these things enough. it is a vicious circle. I would just like to add, that due to my recent change in meds i was talking to my pharmacist and greatly dismayed to learn, that in his words "anyone on proton pump inhibitors (nexium) for more than one year should also be on calcium supplements as the ppi's leech calcium from your bones" hence, the risk of fractures someone mentioned here. i WAS on calcium for years, because of past MVA injuries and bone breaks (i thought that was the reason), but never realized I also needed it because of the reflux meds. I quit my calcium 1 1/2 yrs ago because it was so constipating, which for me is a migraine trigger, being constipated. I am now rethinking that decision. I will try to watch for your updates to see how you all do with the reflux. I hate being on the meds as well. but even now i can "feel" it, although it is afternoon, all i have ate today is oatmeal with bran, and a cup of milk. but then, i ate late just before bed last night so....again, bad choice.

 
Old 05-23-2010, 01:29 PM   #14
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Re: Stopped Nexium and Acid Reflux

one more thing. someone said they are sleeping with lots of pillows? i used to have the head of my bed up on blocks about 6 inches off the ground. it was weird getting used to that, but it DID help, and was better than when i tryed pillows.

 
Old 05-23-2010, 07:40 PM   #15
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Re: Stopped Nexium and Acid Reflux

Quote:
Originally Posted by LMF123 View Post
Hello Xee,

I had a ridiculously busy week so I didn't get to my week eight update. Monday will be week nine off Nexium and I am feeling much better just in the last few days. I had relentless heartburn as the main rebound symptom. This has eased over the past week. The two biggest changes I have made, and again, I don't know if it is just the rebound finally settling down or a combination of what I am doing. Over the past two weeks I have cut carbs down considerably. I still eat one serving, either bread with a sandwich or a bit of brown rice, plus fruits (apples are tolerated best by me right now). I also started drinking the apple cider vingear (thanks again Rosebloom) twice a day diluted in water. I enjoy a oil and vinegar dressing so I actually don't mind the taste. The last two days (knock on wood), I have had no heartburn at all. I also take cal/mag supplements 3 x per day. Yesterday I actually said to myself, "I feel pretty good" and I don't know when the last time that was (both with Nexium side effects and then the rebound). I hope I have turned a corner.

With regards to the throat irritation, I still have this, more so now at night than all the time. I wake up with a dry throat and of course your mind races and you wonder if it is the reflux throwing a flame into your espophagus. Xee, I suffered from anxiety a few years ago (have you read Charles Linden's book? That book saved me from anxiety and medication and I have not had anxiety like that again). I know how a symptom can lead you to panic and awful thoughts. I keep water by my bed and sip on it. I am usually so tired from my days that I go back to sleep. When it was at its worst, I would suck on lozenges in the night also. For me, as the heartburn has subsided, so has the throat irritation. I have never really suffered from night time reflux so the throat was a concern. I am hopeful that it is getting better as the heartburn is reduced. Try to be calm and not jump to the worst conclusions. If I can answer any other questions, please let me know. I am glad someone other than Rose is finding my comments useful.

Be well.
Congratulations on your progress and sticking to your plan. I am now completely medicine free. I don't know for how long, but I have managed to be off Aciphex since January and Zantac for about two weeks. This rebound lasts many, many weeks. I am so glad to hear you are making good progress.

Rose

 
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