nothing new on nexium, this detective is still searching for relief

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marigoldgirl81

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Well, i have now tried the ent dr's nexium pills for a week, and nothing has chnaged, he did want me to up it to 2 but i couldn't handle the side effects. He wants to do a scope next week. I am now becoming very curious that this is not just about acid overproduction, but more solely my LES muscle. As i am my own advocate b/c my dr's are durabfounded about why my reflux is so aggressive and persistent despite all my life changes.....i truly think (and have thought) the drug xanax that i am weaning off of (and have been for a year) has to play a role in my misery. I have read it is bad for the LES muscle but the GI dr says thats not true,??I am weaning as quickly as possible (i am on a very small dose after 1 1/2 years of weaning), my GI dr wants me to hold my last wean b/c he thinks it will make it worse, which i see his point, but i'm already in a living hell everyday. I am not quite sure how i have a throat left after so many months of this.

When you don't respond to PPi therapy like this lucky soul, wouldn't it mean there is something else going on?

Well, i'm off to my day to try and distract myself from the pain and this condition as that will make it worse but i have to solve this odd puzzle b/c nothing anymore, even temporaily gives me relief. Except when i go to bed, oh i love that feeling b/c it can heal a bit and i wake up in the morning with no regurgiation yet or anything, everything is somewhat peaceful in the middle of the night.
 
Personally, Nexium was the worst of the PPI's for me. I developed IBS after just 2 weeks on Nexium. I'd had no sypmtoms prior to taking it and from day 1 had major side effects. I have been on all other PPI's even at twice per day without the same side effects. Nexium also gave me heartburn which I had never had before. While severe, my reflux had been of the "silent" nature. The heartburn went away when I went off the Nexium, but my digestive issues are still with me 19 months later. What a pain.

You've had quite a few posts and I can't remeraber them all. Have you had a Manometry done yet? How about pH testing? They usually do them both at the same time. The Manometry lets them know where to place the probe in addition to measuring the strength of your LES.

I know in my case I had both tests done about 3 years apart. My first tests results were bad. Three years later they were in the extremely bad category. My LES was functioning so poorly that no amount of diet and lifestyle modification was going to compensate. I ended up having surgery in October 08. I'm still on 60mg Kapidex as well and still watch my diet.

By the way, it wasn't my GI doc who initially "fought" to help me figure things out. It was my new Pulmonologist who did a Modified Barium Swallow/Esophagram and proved I had acid coming up and irritating my lungs who lit the fire under my GI doc. He said there was no way I could get my breathing under control until I got the reflux under control. That promped my GI doc to really stand up and pay attention. He didn't take my complaint of the chronic cough seriously before that. It took a trip to emergency because I couldn't breathe to start things rolling. It never should have gotten to that point. At the same time, I ended up with a new PCP who recommended going to a university hospital to get help. If I hadn't been so far along in persuing the surgical route, I definitely would have gone that route to get help.
 
I have not had those specific tests, they have not even been mentioned. I thank you for your response as you've made me think about how i need to put more pressure on my dr, i seek my 2nd GI opinion next week. I have had more than a few episodes where it burns my lungs now. Currently, my next steps are, ent next week (2nd opinion) he said if things aren't better on nexium he wants to do a scope and a 2nd opinion with a GI dr. My original GI dr is not very helpful and told me to see him in 3 months again and follow up with the ent and his suggestions. I am on a restricted diet and the whole nine yarRAB with lifestyle modifications. I have a constant sunburn feeling in my throat, esophagus and it is very inflammed and red when you look inthere and has been with bizarre shapes on one side of my throat (where the reflux predominates). Thanks for your tips, will bring this up with ent next week. I have been told to watch my stress, diet and try the nexium.
 
You may need to give it a bit more time. It generally takes several weeks to notice a significant improvement from any PPI medication, particularly if you've been dealing with GERD for a long period of time.

My GI told me that it would take 8-12 before I would notice a significant improvement from Nexium and he was correct. I did notice some improvement before then - particularly less noticeable reflux, but the irritation, inflammation, excessive mucus, etc. took about 10 weeks of Nexium plus lifestyle changes to improve.

It's not unusual for someone to need to try a couple of different meRAB before finding one that works for them so don't give up on the PPIs just yet.
 
When you find a good PPI for you, it will take months to really heal.

With the exception to the Nexium which was bad for me, I spent a minimum of a month on each PPI to see if it would make a difference. It not only gave me at least 4 weeks to see if I was seeing any difference, it also justified to insurance that I'd tried it before going on to the next. I needed that to get insurance approval for some of the non-formulary PPI's.

Scoping is good to see if there is damage. It really does take the pH testing to get an idea of how bad the reflux is. When you go to your ENT, ask about a dual probe 24 hour pH. They put a probe above your LES...that is the standard used in the single probe one as well, they then put a second probe above your UES that measures the acid hitting your throat. My GI doc only prescribes the single probe tests, but my ENT does the dual probes and/or a single probe above the UES. You just need to ask to make sure you get what is best. There is also a BRAVO probe that is a capsule inserted by Endoscopy. You don't have to wear the "tubes" like you do with the other 24 hr pH tests, but I haven't heard that they can be used to measure acid in the throat area. It just measures the acid above the LES.
 
well, good to know, i will bring these tests up with him.

My current problem is i KNOW there is damage, i can feel it, i keep getting a throat infection right where one of the erosions are. The pain never goes away now, mostly its dull but sometimes sharp. I can't imagine another month of this let alone a day. The left side of my gums feel way more worn down than the right side when i run my tongue against them (in the back).....so, my problem is, how do i react if/when they do find damage, can you fix someone whose esophagus has been burned so badly or are they going to say, oops, well you should have got a 2nd opinion sooner. I feel upset i let this constant burning go on for so long, i just really thought i was healing but after awhile i realized i couldn't be with the acid relux getting worse and i was trying to go about daily life for months and not focus on this but now it has my full attention and i just truly hope after 6 months of this that there is a chance i can heal.

The good news is in July i had no erosions yet but i feel much different than i did in July and the ent said he saw no mouth ulcers only inflamation but he neeRAB to scope if pain continues next week...which i guess i am fearing. I am not scared of cancer after only 6 months of this but maybe of my esophagus tearing and no returning. I am not trying to be gloomy, i am trying sooooooooo hard to hold my head up in pain through every day of this and go about life with my son and husband and work and not letting everyone see the discomfort i'm in. My mom told me they know i'm in alot of pain and hiding it well. Well, on this board i let loose...b/c i am scared. I have to reassure my family everything will be ok but i truly do not know anymore and i guess here i let my fears come to the surface.
 
If your throat is damaged, manuka honey could help. It's expensive, but definitely worth it if it helps.
 
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