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  • Prilosec Weaning HELL - Please help

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    Old 01-14-2015, 12:44 PM   #1
    CosMicCat
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    Unhappy Prilosec Weaning HELL - Please help

    Hi everyone,
    I am trying to wean all the way off of my Prilosec and am having such a hard time but am determined to do it once and for all. I really need feedback from anyone who has done this successfully. I have read the archives and have received lots of great info. I just want opinions from others regarding my current plan and progress.

    I have been on very high doses of PPIs. In March of 2014, I was on 80mgs of Protonix and 40-60mgs of Pepcid daily! I switched to 60mgs of Prilosec and cut down to 40mgs Pepcid. That was in the summer. So, around July 2014, I started weaning again.

    From July 2014 until now (Jan 14th 2015) I have went from 60mgs Prilosec and 40mgs Pepcid, down to zero Pepcid and only 20mgs Prilosec! I take 10mgs in the morning and 10mgs at night. I thought that was pretty good progress, though it has been very hard.

    I have been using melatonin to combat the reflux and it does a great job. It strengthens the LES muscle. More on that in another post though.
    I also take enzymes and probiotics. They help my gut but not my reflux.

    ANYWAYS, I got a little over confident, thinking how hard can it be to drop from 20mgs to nothing? So, for a week I dropped down to only 10mgs Prilosec daily and had mild nausea. Then, Friday night, I took 10mgs and went all of Saturday with nothing. Then, Sunday came and I felt ok and still took nothing. THEN AT NIGHT IT HIT. Sunday night was awful and I ended up back on Prilosec.

    My right side hurts so bad. It is my colon. My large bowel feels inflamed and ulcerated.

    I am back to 10mgs at night and 10mgs morning. Here is my plan:

    I need to heal from this last episode, so I have to stay on this current regimen for at least another month or two. Then, I will cut 5mgs out at a time, and stay on it for a month, then cut another 5mgs, etc etc.

    Do you think that is a good plan? Why is this last little bit so much harder than the rest? Dis anyone have their colon feel inflamed?

    Ugh. I am so sick of this. I never want to be on these drugs ever again. EVER. Please help. Thank you

    Last edited by CosMicCat; 01-14-2015 at 12:46 PM.

     
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    Old 01-14-2015, 09:00 PM   #2
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    Re: Prilosec Weaning HELL - Please help

    actually I did the opposite of you took half doses of the ppi and used Pepcid when needed.you will have set backs as I did also but keep on fighting because it will get better.the most important tip I can give you is keep a diary of every thing you eat and drink.learn what sets your acid reflux off and stay away from the trigger foods.good luck

     
    Old 01-14-2015, 09:02 PM   #3
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    Re: Prilosec Weaning HELL - Please help

    Thanks so much! How long did it take you to wean off completely?

     
    Old 01-14-2015, 09:49 PM   #4
    the ranger
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    Re: Prilosec Weaning HELL - Please help

    Took me about a year to get off ppis.I still take over the counter Pepcid when needed and tums once in a while.I have found with acid reflux I really have to watch what I eat and drink.If you have any questions just ask.

     
    Old 01-15-2015, 02:20 AM   #5
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    Re: Prilosec Weaning HELL - Please help

    I've tried to get off the PPIs but I just can't. I guess some people just need to take them.

     
    Old 01-15-2015, 12:05 PM   #6
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    Re: Prilosec Weaning HELL - Please help

    Quote:
    Originally Posted by CosMicCat View Post
    Hi everyone,
    I am trying to wean all the way off of my Prilosec and am having such a hard time but am determined to do it once and for all. I really need feedback from anyone who has done this successfully. I have read the archives and have received lots of great info. I just want opinions from others regarding my current plan and progress.

    I have been on very high doses of PPIs. In March of 2014, I was on 80mgs of Protonix and 40-60mgs of Pepcid daily! I switched to 60mgs of Prilosec and cut down to 40mgs Pepcid. That was in the summer. So, around July 2014, I started weaning again.

    From July 2014 until now (Jan 14th 2015) I have went from 60mgs Prilosec and 40mgs Pepcid, down to zero Pepcid and only 20mgs Prilosec! I take 10mgs in the morning and 10mgs at night. I thought that was pretty good progress, though it has been very hard.

    I have been using melatonin to combat the reflux and it does a great job. It strengthens the LES muscle. More on that in another post though.
    I also take enzymes and probiotics. They help my gut but not my reflux.

    ANYWAYS, I got a little over confident, thinking how hard can it be to drop from 20mgs to nothing? So, for a week I dropped down to only 10mgs Prilosec daily and had mild nausea. Then, Friday night, I took 10mgs and went all of Saturday with nothing. Then, Sunday came and I felt ok and still took nothing. THEN AT NIGHT IT HIT. Sunday night was awful and I ended up back on Prilosec.

    My right side hurts so bad. It is my colon. My large bowel feels inflamed and ulcerated.

    I am back to 10mgs at night and 10mgs morning. Here is my plan:

    I need to heal from this last episode, so I have to stay on this current regimen for at least another month or two. Then, I will cut 5mgs out at a time, and stay on it for a month, then cut another 5mgs, etc etc.

    Do you think that is a good plan? Why is this last little bit so much harder than the rest? Dis anyone have their colon feel inflamed?

    Ugh. I am so sick of this. I never want to be on these drugs ever again. EVER. Please help. Thank you
    We are in the same boat, I too have gone down from 40mg Nexium 1 x day to 5mg 1x day, it has taken me approx 10 months to get where I am. After I reach the 20mg 1 x day I tried to reduce too much and too fast, I was so beyond SICK, I have never been so SICK in all my life, like I was withdrawing from some street drug. So like you I went back to where I was to even things out before I reduced again, I reduce 5mg at a time and yes I still felt the rebound, but no where as bad as what I had experienced that one time. After things settle down and I'm feeling really good I reduce another 5mg, so that is where I am now and for the past week I feel the burn in my throat and chest. This is the first time in all of my reductions that I have burned this much and how I know and believe that it is rebound is, I never had these symptoms before Nexium, my main complaint before nexium was regurgitation 27/7, it never stopped.

    I think once I settle down, I will cut it to 2.5mg for a while before I stop all together, I too am using some melatonin but haven't notice a difference yet. What helps me in a pinch is chewing sugar free non mint gum and aloe vera juice (inner gel). Also ph balance drops in my water.

    I will say that I know that something I ate triggered this as it was too spicy and I didn't realize it until it was too late, because before that I was coming along just fine.

    All I can say is hang in there, do not reduce TOO FAST, it could take well over a year to get off. Slow is the way to go!!! Watch what you eat!!

     
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    Old 01-15-2015, 12:32 PM   #7
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    Re: Prilosec Weaning HELL - Please help

    I am so sorry you are going through this too. I agree, I think it may be easier to kick heroin that quit PPIs. I have had to wean off of medications before and have even had bad withdrawal symptoms, but they usually go away within a few weeks. Prilosec and other PPIs are just insane. I cannot believe how bad this is. I feel like I have been sick for one year. I was so excited, thinking that I could stop taking Prilosec, really believing that I would be done with it for good last week. It is so depressing to realize that not only am I not done with it, but it could be several months to possibly a year to get off of it.
    I am trying to encourage myself by remembering how far I have weaned down. I mean, 60mgs Prilosec and 40mgs Pepcid to only 20mgs Prilosec is good progress. I have to remember that if I did that, I can do the rest. But it is going to be painfully slow.
    I am now back on 10mgs morning and 10mgs at night. I think I am going to stay this way for another month, at least. And then, I will take 5mgs in the morning and 10mgs at night for 2 months. Then I will cut down to 5mgs morning and 7.5mg at night for 2 more months. then 5 and 5, and then I guess 2.5.
    The Melatonin works so well for me. the rebound I get is not so much esophageal but gastric. The melatonin has sufficiently tightened the LES for me. You have to give the Melatonin time to work and be consistent with it. It has been a miracle for me. Literally cured me.
    Please keep me posted on your progress and I will keep you posted on mine.
    Ugh!

     
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    Old 01-15-2015, 07:20 PM   #8
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    Re: Prilosec Weaning HELL - Please help

    I had the same thing happen to me the past few days. Ran out of PPI's so I thought now's the time to quit for good. Ended up with nausea and lots of pain. Now I'm back to taking 10 mg. I'm traveling next week to San Diego and sure don't want to feel like crap when I'm there. Looks like this is going to take a long time. I started weaning myself in November. My husband says I should go to the dr. I'm sure he'll just tell me to get back on a higher dose.

     
    Old 01-16-2015, 08:58 AM   #9
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    Re: Prilosec Weaning HELL - Please help

    Normally, I would agree with your husband and say go to the doctor, but honestly I do not think they will help you in this situation. They will likely deny that rebound exists, or minimize it and just tell you to stay on your higher dose. I would only go to the doctors if you are really sick and need them to make sure nothing serious is happening. I do hope you will feel better soon. I would just go back to your normal dose and wean 5mg at a time, staying on each new dose for a minimum of 4 weeks so your body can adjust. That seems to be the best way to do it.

     
    Old 01-18-2015, 07:53 PM   #10
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    Re: Prilosec Weaning HELL - Please help

    That is it. I am weaning down again. I have too. My health has never been so poor. I am cutting down 5mg at a time. I go to 15mg tomorrow.

     
    Old 01-19-2015, 08:09 AM   #11
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    Quote:
    Originally Posted by CosMicCat View Post
    I am so sorry you are going through this too. I agree, I think it may be easier to kick heroin that quit PPIs. I have had to wean off of medications before and have even had bad withdrawal symptoms, but they usually go away within a few weeks. Prilosec and other PPIs are just insane. I cannot believe how bad this is. I feel like I have been sick for one year. I was so excited, thinking that I could stop taking Prilosec, really believing that I would be done with it for good last week. It is so depressing to realize that not only am I not done with it, but it could be several months to possibly a year to get off of it.
    I am trying to encourage myself by remembering how far I have weaned down. I mean, 60mgs Prilosec and 40mgs Pepcid to only 20mgs Prilosec is good progress. I have to remember that if I did that, I can do the rest. But it is going to be painfully slow.
    I am now back on 10mgs morning and 10mgs at night. I think I am going to stay this way for another month, at least. And then, I will take 5mgs in the morning and 10mgs at night for 2 months. Then I will cut down to 5mgs morning and 7.5mg at night for 2 more months. then 5 and 5, and then I guess 2.5.
    The Melatonin works so well for me. the rebound I get is not so much esophageal but gastric. The melatonin has sufficiently tightened the LES for me. You have to give the Melatonin time to work and be consistent with it. It has been a miracle for me. Literally cured me.
    Please keep me posted on your progress and I will keep you posted on mine.
    Ugh!

    Thank you for the info, I will continue with the melatonin and I am also doing the digestive enzymes and I think they are helping too. My throat is feeling much better than last week and actually I felt really good yesterday.

    Your plan for reducing sounds like a good one, nice and slow and I would even add a food journal to track your food triggers if you haven't already. I will say as you reach the 5mg mark you may have to stay there longer than you may want as that's almost nothing in your system as far as the ppi I mean. I have been on 5mg 1x day for a while now, I am going on a cruise this Friday and once I'm back I am going to reduce to 2.5mg and see how that goes. I pray once I am completely off I can manage my symptoms with diet, exercise and natural treatments. I pray that for you and everyone on this road as well.

    I will keep you posted

     
    Old 01-19-2015, 08:15 AM   #12
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    Re: Prilosec Weaning HELL - Please help

    Quote:
    Originally Posted by jewels5759 View Post
    I had the same thing happen to me the past few days. Ran out of PPI's so I thought now's the time to quit for good. Ended up with nausea and lots of pain. Now I'm back to taking 10 mg. I'm traveling next week to San Diego and sure don't want to feel like crap when I'm there. Looks like this is going to take a long time. I started weaning myself in November. My husband says I should go to the dr. I'm sure he'll just tell me to get back on a higher dose.


    You can do it!!! Solw slow slow is the way to go and watch your food intake, have you tried taking digestive enzymes? Ph balance drops to akaline your system, they have really helped me with my rebound.

     
    Old 01-19-2015, 02:00 PM   #13
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    Re: Prilosec Weaning HELL - Please help

    I feel for you and anyone else going through the hell of weaning off PPIs. OMG it is so hard. I also would rather have been qutting heroine than PPIs. Anything that messes around with the level of acid in the body should surely be banned.

    Anyway, your plan sounds good. You are thinking clearly and that is important when going through this, as you know, no-one is going to come up with a plan for you. And doctors just want to hand out more drugs and deny that rebound exists.

    I don't know why the last bit should be the hardest, but rebound seems to have a mind of its own. I also think that its cumalative, so that you will be experiencing rebound from any reducing you did a few months ago and then when you reduce again you are adding to the rebound you are already dealing with.

    You are doing the right thing, slowly slowly does it and you will get there. If you have to stay on the same level for a while then do that rather than doing it too qucikly and finding you can't handle it.

    Healing thoughts your way

     
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