Alternatives to PPI's

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imlily
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   Posted 3/2/2014 6:50 PM (GMT -6)   
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Has anyone on this group tried to get off a PPI' after long term use? I understand it cannot be done cold turkey. I have been surfing the Internet for information on how to get off. I have been taking one for over 10years now and I am feeling the same symptoms now taking Nexium as I did when it all began. Today I am really sick with nausea, dizzy and off balance and don't want food. I wish I had been more proactive into looking at this years ago but I felt 'Safe'. Has anyone tried digestive enzymes, raw apple cider vinegar, dgl licorice or betaine hci. I would be interested in hearing if any of it worked for anyone. Thanks lily

Post Edited By Moderator (dencha) : 5/2/2014 7:21:45 PM (GMT-6)


Prairie ranger
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Date Joined Feb 2014
Total Posts : 36
   Posted 3/3/2014 10:49 AM (GMT -6)   
Dgl, aloe juice, and slippery elm is what I have tried. They kinda work for me for an hour or two for relief but I still burn up. Hiatus hernia and gastritis. I wouldn't try any acid such as hcl,or vinegar if you have gastritis or an ulcer.

ericapeace2000
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Date Joined Mar 2012
Total Posts : 1110
   Posted 3/3/2014 12:14 PM (GMT -6)   
Lily,
I was on a PPI for 9 years and I weened down very slowly over about a 6 month time period. My doctor thought the PPI use caused IBS symptoms. I continued a very strict diet, chew gum, continued to drink alkaline water, continued with digestive enzymes, and supplimented with Gaviscon at night. I also take Magnesium, Clacium, B12, and Vitamin D.  I am now on an OTC Pepcid twice a day (an H2 Blocker). The most effective to help me with my GERD has been diet change including going gluten free and lactose free. I also sleep on a bed wedge, do not eat within 3 hours of going to bed, and eat slow. I am not perfect, but I am better and I am off the PPI.
GERD Moderator; Diagnosed GERD, possible IBS; Gluten free since 2012; low lactose since 2012

imlily
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Date Joined Feb 2014
Total Posts : 166
   Posted 3/3/2014 1:47 PM (GMT -6)   
Wow thanks for your reply. I am totally at a loss. I feel the way I did when I sick before I started on a PPI. Truthfully I don't think I should have been on one for so long but I felt 'safe' taking one as I could eat pretty well, I did eliminate the things that are triggers and so I could enjoy life. Now I am so sick again with nausea dizziness and not wanting food. My doctor seems to be at a bit of a loss as well. I might have to go again to a GI doctor but when I did the last time he said 'keep on taking the PPI' so that wasn't much help. this morning I went to the Vitamin Store and bought some dgl licorice betain hci and digestive enzymes and apple cider vinegar. I feel I need to be somewhat proactic as I was really really sick yesterday and all night. It takes such a long time to get a doctors appointment and I can't go on like I am at present. I did not take the nexium today. I will take one tomorrow. I want off the prescription medicine and hopefully I will feel better but it might take a while. Thank you for your concern and glad to know that I can eventually get off the PPI but right now I feel trapped.
Lily

ericapeace2000
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Date Joined Mar 2012
Total Posts : 1110
   Posted 3/3/2014 1:59 PM (GMT -6)   
Please tapper off slowly. I was on 40 mg of Nexium. I went down to an OTC Prilosec. Then I stayed on that for a while and then went down to half the Prilosec (I cut the pill in half). I did that for a while and then I started the Pepcid twice a day. The natural remdies are hit or miss. I have tried a lot of them and some work and some do not. You will have to change your diet and I recommend alkaline water. I get the water at my grocery store. A lot of GI doctors do not know what else to do to manage this condition. Mine thought I would be fine just switching right from Nexium to an OTC Pepcid...I knew better from this forum and I did my own process. I tried cold turkey once and I was really sick and eneded up back on the PPI.
GERD Moderator; Diagnosed GERD, possible IBS; Gluten free since 2012; low lactose since 2012

imlily
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Date Joined Feb 2014
Total Posts : 166
   Posted 3/3/2014 2:57 PM (GMT -6)   
When you say 'change my diet' what do you mean? I am so nauseated all the time and dizzy and of course I don't want food so I am losing weight quickly. I will take the nexium every other day. My doctor had told me to switch the nexium for famotidine and I was really sick after the 3rd day so I was back on nexium. You said you tried to quit cold turkey and you were really sick, sick how nausea? I have had blood work done and all was good. So I can only assume it is the nexium making me so ill. I am normally a very busy person and love the gym but I am now staying home and don't want to do anything. I am getting older so I am thinking that I might need more acid in my system than the nexium is allowing me. What do you think of the Apple Cider Vinegar routine? Thanks for you help it is so good to talk to someone.
Lily

ericapeace2000
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Date Joined Mar 2012
Total Posts : 1110
   Posted 3/4/2014 2:12 PM (GMT -6)   
I went gluten and dairy free as well as low fermentated foods (from the Fast Track Diet...avoiding hard to breakdown carbohydrates) and low acid foods. I also have to avoid raw veggies and fruits because of my IBS that I hope will eventually get better with time off the PPI. When I went cold turkey, by the forth day I had the chills, I was dizzy, sweating, heartburn, horrible headache, and shaking. It sounds like withdrawl to me. I tried the apple cidar vinegar years ago and it did not really affect me. Some people swear by it. We are all different.
GERD Moderator; Diagnosed GERD, possible IBS; Gluten free since 2012; low lactose since 2012

javery
Regular Member


Date Joined Sep 2013
Total Posts : 262
   Posted 3/4/2014 2:33 PM (GMT -6)   
I would agree with Erica that the biggest thing is to change your diet in what you eat. I too was on PPI's and am now off and down to Pepcid Complete. I take half a tablet twice a day currently and it's been almost 5 months since I stopped the PPI's. I believe I had some IBS for a little while as I had a lot of bloating and gas but this ended up going away after a couple of months. I tend to follow the Paleo lifestyle though and do allow some things in the Fast Tract Diet. I tried the apple cider vinegar and it didn't help at all. The DGL and enzymes will most likely help you, but if you are tapering off the PPI, then an HCL supplement should be avoided as your body will start producing more acid as you taper down off the PPI's. Supplementing with HCL (or even apple cider vinegar) may cause too much acid and it will seem like things are not improving. I hope you find something that works because I know I am much happier with my life now that I have changed for the better.

imlily
Regular Member


Date Joined Feb 2014
Total Posts : 166
   Posted 3/4/2014 9:08 PM (GMT 0)   
Thank you for both of your replies. what is the 'fast track diet'. I normally eat fairly well and have been lactose free for years. I don't eat high acid foods and I don't drink soda ever. I was down to one cup of coffee but because of not feeling well I dropped that too. I thought the AVF was in a weird way to counteract the rush of acid that comes when you leave off the PPI. I am going back to the doctor tomorrow and will request more testing to make sure there is nothing underlying. I don't know why on earth I didn't attempt to get off the PPI years ago. I guess it was easy and I was comfortable and enjoying a busy life. Maybe I am going to pay for that now. thank you for your input. Lily

ericapeace2000
Veteran Member


Date Joined Mar 2012
Total Posts : 1110
   Posted 3/5/2014 10:01 AM (GMT -6)   
Fast Track is a diet by Dr. Norm Robilliard who also suffered from GERD. He has a different theory of GERD and digestive disorders. He advises to stayed away from lactose, fructose, starches and fiber as they can contribute to Small intenstinal bacterial overgrowth which then causes excess gas in the small intestine, and that pushes the LES open when it should not be. Take a look on Amazon. I blended parts of his diet with Dr. Koufman's low acid foods.
GERD Moderator; Diagnosed GERD, possible IBS; Gluten free since 2012; low lactose since 2012

imlily
Regular Member


Date Joined Feb 2014
Total Posts : 166
   Posted 3/5/2014 1:32 PM (GMT -6)   
Thank you I will check it out. lily

justsayno
New Member


Date Joined Mar 2014
Total Posts : 18
   Posted 3/5/2014 2:03 PM (GMT -6)   
I recently started weaning myself off ppis by tapering the dose. Had been on Prilosec 20 mg daily for about 12 years. I am feeling better most days even at a lower dose every other day. Occasionally, still have heartburn but think it's mostly the acid-rebound affect. Though even when I was on a full dose daily, I would still have occasional heartburn and reflux, especially at night.
Really think the key to getting off ppis is a combination of diet and alternative remedies for heartburn. I try to eat frequent small meals, avoid trigger-foods, and use honey, alka-seltzer gold, zantac and sips of low-fat milk to help with the tapering process.

imlily
Regular Member


Date Joined Feb 2014
Total Posts : 166
   Posted 3/5/2014 3:15 PM (GMT -6)   
Justsayno when you say you use honey do you mean Manuka Honey. I tried that a long time ago and I can't say if it really did anything or not except to have me spend a lot of money buying it.
I have been taking nexium every other day so far this week and so far so good. I don't want to do anything drastic as my GP wants me to go and see a GI doctor. I hate to go but know it is the right thing. I have to find one first and get an appointment. Will keep you posted.
Lily

justsayno
New Member


Date Joined Mar 2014
Total Posts : 18
   Posted 3/7/2014 8:10 AM (GMT -6)   
Lily- I just use regular honey. I read that raw honey is supposed to be better but the cost is too steep for my pocketbook. I'm not sure how much honey is helping as I am trying several different things to help with the heartburn/reflux. It's supposed to help soothe your esophagus and stomach.
Another remedy I am trying is Blackstrap Molasses, which you can purchase at most health food stores. I use 2 tsps. in a cup of hot water and drink first thing in the morning. Certainly not a substitute for my much missed cup of coffee sad but better than having the heartburn from the acidic coffee. It contains iron, potassium, and some other much needed vitamins so even if it doesn't "cure" my heartburn/GERD, it may help replace some of the nutrients I need.
Some days I am tempted to just resign my self to another 10-20 years of ppis, but would dread to think what other health problems I would develop by being on them again.

imlily
Regular Member


Date Joined Feb 2014
Total Posts : 166
   Posted 3/7/2014 11:57 AM (GMT -6)   
Hi Just say No. this is one difficult situation isn't it. darned if you do take PPI's and darned if you don't. I started taking mine every other day but I have now gone back to every day. I could not deal with the burning pain along with nausea and dizziness which has held me since yesterday morning with no let up. I have an appointment with a GI doctor next Thursday if I can hang on that long as I feel very very sick. My life is on hold as I can't go out anywhere and I can't concentrate on anything at all. If the nausea and off balance dizzy feeling would stop I could cope but right now I am having a lot of difficulty. I hope you can work through it all and stay off the PPI but I can certainly see why you would revert back to it. What a horrible mess it is but the doctors don't see it do they.
lily

justsayno
New Member


Date Joined Mar 2014
Total Posts : 18
   Posted 3/8/2014 7:50 AM (GMT -6)   
Hi, Lily- I am sorry you are feeling so sick. It sounds like withdrawal symptoms(nausea,dizziness,etc.) I hope you can get some answers from your doctor. Have you ever had an endoscopy?
Maybe a low dose of ppis might have less side effects...I haven't read anything about the side effects from this and if they are less than say 20mg or more.
Have you ever tried chamomile tea? It can sometimes help soothe your stomach.
I am just trying to take it one day at a time and hopefully get to the place where I can be off them completely...but if not, then at least at a low dose. Some days are definitely better than others. When I was on 20-40mg of either Prilosec or Nexium a day, I would still experience heartburn and reflux at times. So, for now, the heartburn/reflux I experience being on a lower dose(10mg) every other day is preferable. Next week, I am shooting for every third day and see how that goes.
Hope you're feeling better soon, Lily.

imlily
Regular Member


Date Joined Feb 2014
Total Posts : 166
   Posted 3/8/2014 12:26 PM (GMT -6)   
I originally went to the doctor thinking the nexium had stopped working as I was having this nausea, dizziness and off balance feeling because that is what caused me to seek help way back when. Same symptoms. I am so confused about it all and feeling lousy to boot. I have an appointment next week with a GI doctor and feel sure another endoscopy is on the horizon (yuk). I have tried a tea called 'Stomach Ease' and it worked well. Have you tried the dgl before a meal and digestive enzymes? I think you are doing so well getting down to a lower dose. Do you experience any nausea or other symptoms other than the burning and reflux. What will happen in the long term with you. won't the reflux burn the digestive tract? Do you eat well. How did you get your lower doses of medicine. I am sure my insurance won't pay for 40mg then 20mg as I get mine every 3 months. It is expensive and I would love to get off it but I am not seeing the way right now. I could take the burn and discomfort but not with the nausea. thank you for your concern and good luck with your quest. Keep on posting so that I can see how you are doing. Lily

speedygerd
Regular Member


Date Joined Jan 2012
Total Posts : 87
   Posted 3/8/2014 1:11 PM (GMT -6)   
I went off 40mg Omeprazole 2x / day nearly cold turkey. For the first few weeks I was pretty dyspeptic (burning stomach, nausea after eating, etc.), and tried to control that through H2's and just relaxing. After about four weeks things stabilized and got better from there.

I was able to stay off PPIs for a couple months and control GERD with occasional h2 usage. I'm now back on a low dosage (20mg / day) and convinced that anything higher than that impedes my digestion of proteins and fats enough that I have other issues. YMMV.
Follow my journey: http://acidrefluxjournal.com/

imlily
Regular Member


Date Joined Feb 2014
Total Posts : 166
   Posted 3/8/2014 4:53 PM (GMT -6)   
Hi speedygerd, How long were you on the omeprazole? did you get off with your doctors guidance. Was your gerd pretty bad. Are you hoping to accomplish complete withdrawal eventually?

imlily
Regular Member


Date Joined Feb 2014
Total Posts : 166
   Posted 3/8/2014 5:03 PM (GMT -6)   
Speedygerd, I just went to the website you put on the bottom of your last post. was that you that went through all of that? It sounds like torture. I assume an endoscopy and colonoscopy was done before all those other tests.
lily

rjdriver
Regular Member


Date Joined Dec 2013
Total Posts : 63
   Posted 3/8/2014 6:01 PM (GMT -6)   
Lily,

If your GI doc wont prescribe you a lower dose to help you wean off the PPIs, you can get empty gelatin capsules at Walmart or most pharmacies, and halve the dose by creating your own. More work for you, but it may be the only way until you can deal with 1 cap every other day. The sooner you get off the better, and please follow Erica's path regarding the supplements. Your system has not been properly absorbing all those nutrients since day one on PPIs. You have a lot of ground to make up after 10 years use. Osteoporosis is extremely common for long term users. I would schedule a bone density test with your primary care doctor to assess that. People tend to think of osteoporosis as an "old persons" disease, but several years of PPIs can age the bone of a 25 years old to look like 65 year old in short order.

Also, if you have gas and bloating to go with your nausea and other symptoms, then the Fast Track diet that Erica mentioned is the way to go. This condition seems to effect people in a large variety of ways, and we all react differently to treatments, but reducing or eliminating gas is a major step in getting it under control. Gas in the stomach has only one way to go - UP. It can force open the LES and bring stomach acid up with it.

Uhura
Regular Member


Date Joined Nov 2005
Total Posts : 166
   Posted 3/8/2014 6:10 PM (GMT -6)   
What is dgl? And are aciphex and Carafate PPIs?

Doesn't sound like any of you are having fun going off them. I hope I don't have to experience what you are. Good luck to all of you and I will keep you in my prayers.
Hope everyone is well and having a pain free day.

distantfrog
Regular Member


Date Joined Oct 2013
Total Posts : 33
   Posted 3/9/2014 1:04 AM (GMT -6)   
Hi Lily and others,
 
This is an interesting post for me.I've been on ppi's for about 15 years and about two years ago bad digestion symptoms started creeping up and i had all the tests endoscopy,ph/manometry,etc...I do have acid reflux but apparently not strong enough to be recommended for surgery.
So i tried to ween myself off the 40mg/day ppi (nexium) over about 6-7 weeks last summer and i started developing LPR symptoms so i went back on them.The ENT doctor scoped me and said my throat was fine but i know that it is not.
In January 2014 i tried again to ween off but more cold turkey as the side effects of chills,numbness in lower limbs,weight loss,gas/bloating,abdominal cramps, were very scary.I was doing well for about 3 weeks by just supplementing with H2 blockers in evening mainly but after that i started getting some kind of acid rebound (which is supposed to be much earlier) and ended up with the sharp pain under the rib cage every night which seem to increase so i had to go back to the 40mg/day plus xantac in evening for now.
The home base remedies helped for awhile but none were good enough to take that sharp pain away.Now the pain is manageable but i generally feel rotten again.One thing i learned for sure is that outside the epigastric pain, i feel much better without the ppi's.So it is annoying that with all those lifestyle changes of diet etc...i still can't do it.
I am trying homeopathic products right now to somewhat detox but i will be trying again in the future over a longer period.But i have the feeling that only surgery to tighten the les can improve my situation.we'll see...
 
I think we all wish we knew what we know now when we were diagnosed but we likely wanted to live productive busy lifes and the pills were working so we kept going.My doctor warned me after 12 years that the ppi's were taking about 90% of the gastric acids out and i started worrying then but it was too late the les was more damaged.The pills don't cure gerd,they just appease the symptoms and the disease continues to grow we must try to keep the growth under control.  
 
Louis               

justsayno
New Member


Date Joined Mar 2014
Total Posts : 18
   Posted 3/9/2014 8:48 AM (GMT -6)   
hi, Lily and all-
I have not tried dgl or digestive enzymes yet...just can't tolerate chewable tablets, and as for digestive enzymes, I have been eating a stalk or two of celery after meals as it is supposed to aid in digestion. Not sure why but likely because of the water content in celery and how it causes you to produce more saliva and aid in digestion. That is what I have read anyway. Also, chew cinnamon gum if I feel heartburn beginning. It seems to help for the most part. Not sure what will happen in the long run with my digestive tract but I am beginning to feel better than I did on ppis. I think a lot of the way I feel lately without as many GERD symptoms as I had on ppis is due mostly to eating healthier, avoiding what are trigger foods for me, and eating smaller, more frequent meals and not eating 3-4 hours before bedtime. I lowered my dose by removing the top of each capsule and gently shaking out some of the medicine so it was only a half of the amount,replacing the top capsule. I think I still have a long way to go;I am going on my 5th week starting tomorrow of lowering the dose...and it will be the week I attempt a half dose (10mg) every third day. There has to be a cause for GERD/heartburn and if I can just get to the root of it and treat that instead of just popping a pill every day that really isn't curing it or alleviating the symptoms all that much and possibly causing even more health issues down the road....then all of this will be worth it.
Just don't believe that ppis are the answer to this GERD/heartburn problem...especially if they cause so many other health issues. I now have to live with the damage done to my back through bone density loss which may mean loss of mobility eventually. Think that if I had stayed on ppis any longer, the loss of mobility would just happen sooner. I will miss being able to eat some great food (chili, curried dishes, an occasional dessert) and coffee...but maybe some day I can indulge in these minimally. :)

imlily
Regular Member


Date Joined Feb 2014
Total Posts : 166
   Posted 3/9/2014 2:43 PM (GMT -6)   
I will address Louis first. I think as we get older we need the acid in our stomachs to aid in digestion and the longer we have been on a PPi the longer it is going to take to get off them. What does LPR mean? I think surgery would be a rather drastic answer to anything. I am sort of skeptical about seeing the GI doctor next week because it always seems to be a case of tests and try this and try that which is just their opinion anyway although they are supposed to know all about these digestive problems. Yes, it was easier for me to take a pill and go about my life and enjoy it rather than struggle. I listened to what the doctors said and continued to take the PPI not knowing what I know now about them. Taking Nexium I have been able to have a great social life going out to eat but I was sort of careful in many ways to avoid the triggers. Now I feel like a recluse and I am not looking forward to seeing the GI at all. It has been my worst nightmare as I have a 'thing' about anyone doing anything near my throat and face and get panicky. I do think you have to try and get off these meds slowly. I too am on nexium 40mgs and I have been on a ppi for the last 10years. I have tried to get off several times but always go back because of the burning pain. However, I have since read on this forum that, that is rebound which makes sense after not having acid in the system for years. Read what JustsayNo has been saying about going slowly.
Justsayno are you doing this under your doctors guidance or did you just decide to get off the PPI yourself. Were you checked out before hand? I think I could stand anything but this awful nausea that I have right now. I have this 'feeling' right in the center of my chest then I get nauseaus. I have no pain just what I call 'gut ache'.
I only wish I had found this forum sooner and learned what I have learned then maybe I would have been able to cope with getting off the PPI sooner.
Keep on posting so I know how you are doing, same with you Louis good luck. wish the doctors could tell us how to get off the PPI properly.
lily
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