Getting off of PPIs -- I'm scared

I need some advice -- I have been on a double-dose of Protonix 40mg 2x/day for four weeks. My doctor told me that I should only be on it for that period of time. Since my follow-up appt is not in another 2 weeks and I still have some pills left, I decided to cut the dose down from 40mg 2x/day to 40mg once per day. My reflux is 80% better. I still experience some burning in my throat, but overall I am much better. My question is this... I've heard the horror stories about getting off of them and now I'm scared! Has anyone else had rebound after 4 weeks and how did you deal with it? I DO NOT want to be on these drugs forever but dread the thought of GERD returning. What do I do???
Thanks,
Em

Thanks Denise,
I think I'll try that until I see my doctor next week. Until four weeks ago I had zero heartburn. I just had a terrible flare which I believe was brought on by a combination of stress, NSAID overuse and bad eating habits (processed fatty foods and eating before bed). I have radically changed my lifestyle and eating habits so hopefully I can continue these lifestyle changes and be off of the PPI forever! I am just scared of the reflux coming back.

As a side note: I was getting horrible migraines which have basically ceased since I changed my diet.

This is my fourth day since tapering my dosage back from 40mg/ 2x day to 40mg/ 1x day. I feel okay. I've been a little anxious. Trying to relax... since that never helps! I've noticed a burning feeling in my stomach, not in my esophagus as before. (Antacids do nothing for this sensation) One good thing, I know it's gross, but my bowels have returned to normal. 4 weeks of constipation was not fun! If I can tolerate this, I will go down to 20mg in a week and then maybe 20 mg every other day. I see my doctor in two weeks and we will decide where to go from there.

Thanks Kitt,
Your words of encouragement help!
I hate being on drugs but if need be, I'll have to accept that!
I've made a lot of important lifestyle changes (as mentioned previously) that I hope will curb the GERD without having to take medication. As an added benefit, my migraines have significantly been reduced too! A proper diet can go a long way! I was eating way too much junk and popping way too many NSAIDs on an empty stomach! Believe me... I've learned my lesson. I hope and pray that I will be a success story -- and if so, I will post my sucesses here! This forum has been a blessing to me!
Many thanks to all!
Emily

I am starting my second week. I was on Protonix 40mg/ 2x day for 4 weeks. I reduced my dosage to 40mg 1x day for the past week. Tonight, I would like to go down to 20mg 1x day. If I get through this week, I will probably go completely off the next week or to 20mg every other day. It all depends. I know I wasn't on them for long, but I guess you can get rebound even after a few weeks.
Last week went pretty well. I noticed that on days 3 and 4 I had some nausea which subsided. I also seemed to notice some more gurgling, but on a happier (yet disgusting) note my BMs have pretty much returned to normal. The double-dose of Protonix gave me constipation.
I am eating a pretty bland diet. Just the basics, meat, potatoes, some pasta, veggies and some fruit. No processed or fatty foods. No caffeine, chocolate or acidic fruits/veggies.
I am also drinking alot of water and taking DGL once a day and drinkingSlipperly Elm Tea once or twice a day. It soothes the throat/esophagus.
I have also propped the head of my bead and I give myself 3-4 hours after dinner until I lay down. This has been one of the hardest things for me to do.
I'll keep you posted!
Em

Thanks LP,
Your words of encouragement are far better than any medicine.
Last night I stepped down to 20mg of Protonix. I will wait for another week and then see how am doing before taking the next step. I'm feeling pretty well. My anxiety is still up, which is normal for me. I am a chronic worrywart!

I went to see a psychologist today who will begin biofeedback sessions in conjunction with some relaxation/stress reduction training. I have a long history of anxiety and have tried almost all of the SSRIs (Celexa, Paxil, Zoloft) at one time or another. Although, these antidepressant drugs do help with my anxiety, they have less than desirable side effects and can be difficult to start and stop. I told him that I do NOT want to go back on them and he agreed.

He is also the first person who EVER told me that these drugs have an effect on the gut and can in some cases worsen GI symptoms (stomach bleeding, reflux). Something that I have suspected all along. I felt so enlightened after our conversation! Although he is a psychologist he also has extensive medical background and has studied the physiological effects of stress and anxiety.

It felt great to hear someone tell me that "yes, you can learn to cope with your anxiety without medication" Most doctors just want to hand out their free antidepressant samples and shove you out the door.

I wanted to share this as I know that many with GERD also have anxiety. It is definitely a trigger for me, but not the only one.
Em

So I'm on my third day after cutting my dose back to 20mg/day. (Second week of weaning from 80mg/day)
I feel so much better!
Although I think I overdid it at lunch (ate too much).
I've had a few of what I call burning belches but other than that, I'm pretty good.
What I have noticed is a reduction in my anxiety. I'm positive that the Protonix was making me more anxious. I've read that others have experienced this too from ppis, especially if one is prone to anxiety and depression to begin with (like myself).
Hopefully this great week will continue. I only wish they had a smaller dose of Protonix -- like 10mg. If all things go well this week, I think I'll go to 20mg ever other day and take an H2 blocker like Zantac, Axid on my off days.
Well that's all for today folks!
Thanks to all for their kind words of encouragement, especially Little Peanut!
I'll keep you posted.
Emily

Good Morning Em,

You are dong great and hey if you need to do post in the A & P Forum as we have many members who can identify with your anxiety myself included. 

I would not stop the med completely so I would choose D. but I don't have any real strong logic for why.  It seems I have read that has worked for others............

I am glad you are seeing a  psychologist.  Kudos to you my friend.

Kitt

I am in my third week now. I went through some rebound last week it has since subsided. I am still on 20 mg of protonix per day (after weaning from 80 mg/day). I am debating whether or not to go completely off of Protonix or go every other day. With each dosage reduction I noticed a slight rebound effect beginning on days 3-4 and slowly resolving by day seven. I have been able to quell the rebound effect with 2-3 TUMs EX tablets per day. I want to emphasize that the rebound effect has been no where near to the level of reflux I experienced prior to beginning my month long course of protonix. I would rate the reflux now as a 1-3, before treatment it was 9-10.
Today I have had diarrhea. I am lactose intolerant and have noticed that this has worsened since taking Protonix. I think I need some of those enzymes in my stomach to help me digest. It simply isn't normal to reduce the acid level in your stomach to zero. That my 2 cents worth anyway. I think I'll stop by the drugstore tonight for some Zantac, Pepcid or Axid to have on hand if the rebound becomes intolerable.
I see my doctor this Thursday. I want to ask him about Carafate. I think alot of my problem is due to Bile Reflux which can be treated with Carafate.
I'll keep you posted.

Hi everyone. I thought I would post a little update.
It has been 8 days since I last took my last Protonix. I am feeling great for the most part. The reflux has subsided. The slight rebound I had was managed by Tums.
My doctor gave me the go ahead to go off of the Protonix all together. He did recommend that I keep it on hand to take as needed, especially in times of stress or at times if I know I will be eating something acidic.
For the most part, I have been able to manage the reflux by behavioral modifications which I will continue.
Thanks everyone for your support. XXXOOO
Em

Oh wow! Congrats to you Em!!!

I am on week 3 on taking Protonix and didn't realize the nasty rebound effects. YIKES!! My anxiety was at all all-time high a few weeks ago, which I really think brought on this new GERD for me. I started taking Effexor too... just finished week 2 of that.

This thread was very informative, so thank you all! I will be referring to this when I wean from the Protonix. I've also made many changes, both dietary and behavioral, so I'm hoping the reflux will stay away.

Hi everyone, I know its an old topic but here's my story,

I had this heartburn / reflux problem on an off never had it a continuous thing. I traveled to Iraq where i had too much of fried food etc which flared up the reflux well, then i came back and was having on and off battle with reflux so i decided to see a doctor who put me on nexium etc. then someone suggested me to see a GI expert who again prescribed nexium, zantac and few other meds i dont remember, since i was having too much anxiety and was not thinking through i went to a homeopathic doctor (which i should have done in the first place). I started taking the homeopathic medicine and went cold turkey on nexium zantac etc. things got worse i panicked and dumped the homeopathic medicine which was a bad decision.

then i went to one of the best GI docs in my city he prescribed protium, mebeverine and cedine plus librax. things are under control but i know i cant be on these meds for ever and i dont want to as protium is giving me sides effects like anxiety etc. My BMs are regular although sometimes i feel like going to the rest room but all there is gas. Im also taking husk in the evening and chia seeds in the morning.

I know one thing for sure that these medicines are not treating the problem but just the symptoms, so im back with the homeopathic doc who gave me some meds and told me to wean of other medicines over a period of 4 to 6 weeks.

i tried cutting my 40mg x 2 a day dose to 20mg x 2 a day dose but it gave me very bad burning sensation in the stomach, also reduced mebverine 200mg x 2 a day to 200mg x 1 a day. My homeopathic doc told me to go slow and one medicine at a time.

so from today i will take 40mg in the morning and 20mg in the evening for the next few days and see what happens. I see you guys are very supportive, hope i will be able to pull it off as these meds are just making thing worse.

Best regards,