Author Topic: Reflux and SS  (Read 2851 times)

SjoDry

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Reflux and SS
« on: September 19, 2014, 12:27:00 PM »
Hi Sjoggie-Mates,

Haven't been on much due to all of my Sjogren's gifts acting up. I recently underwent lots of Esophagus tests to try to figure out what is happening. I have been diagnosed with
Laryngopharyngeal Reflux also known as LPR. In doing my research, I have discovered that it is "silent reflux". My doc was suggesting a surgery called Nissen Fundoplication, which I know that
some of you have had.

Quite honestly, the surgery really scared me. In discussing this with my doc, we decided upon a "still experimental " but approved by the FDA, new procedure called the LINX procedure http://www.linxforlife.com/   The doc says that it will take at least 4 or 5 months to try to get it approved through insurance because it is still experimental. What's another several months of Laryngitis and chest pain, right. It sure beats the other alternative.

They are having great success with this approach. As usual I was doing my research & came across an article that explains the laryngeal & esophageal manifestations of Sjogren's Syndrome. It is an interesting read for those of you who may be having symptoms or can appreciate scholarly articles. I was very perplexed as to why I would be suddenly having what I thought must be GERD after having only a couple of episodes my whole life.

You might wish to read about the difference in GERD and in LPR & then read this article:

http://link.springer.com/article/10.1007%2Fs11926-003-0008-6#page-1

If for some reason that link does not work, google: The Laryngeal and Esophageal Manifestations of Sjogren's Syndrome by: Peter C. Belafsky, MD, PhD and Gregory N.Postma, MD.

Take Care.
SjoDry

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Jasper

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Re: Reflux and SS
« Reply #1 on: September 20, 2014, 08:07:31 AM »
I went to read the article but it looks like you can read it only if you pay for it.

The article would be interesting to read, except I don't want to pay for it..
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SjoDry

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Re: Reflux and SS
« Reply #2 on: September 20, 2014, 04:30:46 PM »
I was able to access it and copied it.
I will send it to you on Monday when I return to work.

SjoDry
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Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

SjoDry

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Re: Reflux and SS
« Reply #3 on: September 22, 2014, 06:56:53 AM »
Having issues cutting/pasting because of the length.
If you would like to read this article, please pm me with your email & I will send it in the body of the message.

Thanks.
SjoDry 
 

 
Sjodry
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Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

deeindiana

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Re: Reflux and SS
« Reply #4 on: September 23, 2014, 08:48:33 AM »
This is an interesting read. I have so much trouble with acid reflux but can't seem to find the problem. My gastro physician keeps running expensive tests and now wants to do a Esophageal pH Test (where they attach a tiny, temporary monitor in your throat). I've read some scary reports about that and am now afraid to proceed. Did you happen to have it done?
Diagnosed June 2010.
Rheumy at University of Michigan Med Center. Age 52
Severely dry mouth & throat with difficulty swallowing, fibro, allodynia of the scalp.
Medications: Atenolol, Dexilant, Zoloft, Zocor, Flaxseed oil, Vit D, Nasonex, Plaquenil
I am my own worst enemy...

SjoDry

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Re: Reflux and SS
« Reply #5 on: September 23, 2014, 09:43:47 AM »
Deeindiana,

Yes, I did.

I had both a 24 hour test and an in-office Manometry test. (am getting the names of my tests mixed up because I had two of them). The one test, I had a tube placed in my throat for 24 hours. This was done while I was asleep getting an endoscopy. I am not going to sugarcoat it..I have a very strong gag reflex & found the tube uncomfortable. However, it showed that in a 24 hour period, I had 35 episodes of reflux that went up to my voicebox. This explained why I am getting Laryngitis several times a week, as well as why I am having horrible chest pain.

The Manometry test was done in the office (while awake). If I am being honest, this one was harder for me because of my gag reflex. Irish gave me good advice...to just stare at something and focus on a thought or vision, etc. It did help me to do that. But I also vomited several times. I am glad that I did both of these tests. It is the only way I would have been diagnosed with the LPR (Laryngopharyngeal Reflux). The LPR can cause damage. You run the risk of having Aspiration Pneumonia or even developing esophageal cancer without treatment.

Though it is uncomfortable...it was really necessary. I strongly urge you to do it. If I can get through as chicken as I am...anyone can.

I do hope that I will never need to repeat either of these tests, but at the same time, I am glad that I went through with it.

Good Luck.
SjoDry
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Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

KRNLMBCH

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Re: Reflux and SS
« Reply #6 on: September 29, 2014, 10:53:46 AM »
I was diagnosed with this "silent reflux" and was shocked.  I never heard of it and never had any "symptoms" like heartburn, etc.  Then I too researched it and was shocked at how bad this can be. 

I don't know if it's the brain fog or what, but when I follow your link I'm taken to a page that just gives a synopsis of the article and then I'm told I have to pay to read the whole thing???  I'm interested in any info. research I can find on this topic, especially, because I have a chronic burning sore throat now to add to my chronic symptoms, which they say is from this reflux.  Please let me know, if you can what I am doing wrong?why I cannot access the entire article via the link.  Thanks for posting.
Karen, 52.  Parotitis, Diffuse Connective Tissue Larynpharoyngeal Reflux, SiccaSyn. Hypothyroid, High BP, Vit.D Defic.,Plaquenil, Prednisone, Cevemeline, Levothyroxine, Nifedipine, VitD, Pantoprazol, Cymbalta, Gabapentin, Fentynal patch

Ladymusic7

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Re: Reflux and SS
« Reply #7 on: December 01, 2019, 06:28:09 PM »
Hi SjoDry!

I came across your post from September 2014 regarding your impending LINX surgery. I?m meeting with a surgeon this week to discuss LINX surgery. I was wondering if you ever had the surgery and how you are feeling after it? I would appreciate hearing how the surgery and recovery went.  Thanks so much !

Sincerely,
Ladymusic7

irish

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Re: Reflux and SS
« Reply #8 on: December 01, 2019, 08:08:56 PM »
This is an old problem as far as I am concerned. I was told I had it about 20 years ago. Basically it is silent because we don't have any symptoms that alert it. My ENT doc told me that it is common and the best thing to do is to sleep with the bed elevated and avoid the acid foods and also the high grease foods.

I have been on pills for reflux for years and do the 20 omeprazole at night and during the day I take Zantac 150 mgm. The best pill in the world is Carafate. Look this med up. It isn't prescribed as much as it was years ago and I think it is underprescribed. (My opinion)

This pill is sort of like chalk and can be melted in a little water or juice and swallowed. It is called a slurry. It can help heal the reflux areas up because it sort of neutralizes the acid. Do not chew it cause it would be like eating chalk. You have to take it about 2 hours after meals and cant take it with other meds.

I am suggesting this to you as sort of something you may want to ask your doctor about. You may want to try to get healed up so that your pain isn't so bad and you will have less stress as you try to make a decision about surgery. I also wonder if a referral might be in order for a second opinion. Sometimes other docs have an idea on how to treat something besides surgery. Depends on on bad the reflux is and if Barretts has developed. Good luck and keep us updated. Irish

SjoGirl

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Re: Reflux and SS
« Reply #9 on: December 02, 2019, 07:29:18 AM »
Thanks for sharing. I had Barrett's esophagus at one time. I have a Hiatal hernia and had horrible reflux, both felt and at times silent. I had even developed a pre-cancerous condition in my stomach, intestinal metaplasia) and had many other issues with my gastrointestinal system.

I took an array of things over the years and was still on a PPI earlier this year. While trying to ID the cause of heart palpitations I stopped taking the PPI (with doctor approval). I was amazed to discover that many of my issues had resolved and I have not taken a PPI for a few months.

I still cannot eat overly spicy food and have to avoid vinegar-based and other acidic foods. I attribute the healing to many things along with taking Imuran, which seems to have tamed inflammation around much of my body.

I say this not to upset you given that you need surgery. Rather I say it to indicate that healing can happen, it's taken about 10 years but it's happened. Hang in there.
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Ladymusic7

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Re: Reflux and SS
« Reply #10 on: December 02, 2019, 04:53:34 PM »
Thank you for sharing your experiences with Gerd symptoms.  My problem with hiatal hernia began about 20 years ago. I had symptoms on and off for years until they became worse in 2013. At that time I was diagnosed with a large paraesophageal hernia. After an endoscopy and a barium swallow test, it was noted that 75% of my stomach had pushed up through my diaphragm and was in my chest cavity. I saw a thoracic surgeon at Memorial Sloan Kettering Hospital in New York City.In June 2013, I had an eight hour surgery in which the doctor brought down the stomach through the diaphragm and repaired that and also did a toupet wrap on my stomach. The surgery was not that bad and it enabled me to pretty much be symptom-free for the last six years. This past August I began to experience chest pain, breathlessness, regurgitation, heartburn, and fullness in my chest. Based on my recent endoscopy it appears that I have a 3 cm hernia in the chest cavity and in 42 hours of recording on the BRAVO test, I had 86 episodes of chest pain, heartburn, and regurgitation. I?ve become so full after eating and cannot bend forward as everything comes back up and burns. When the esophagus expert called with my results, he said I would be a good candidate for the LINX surgery. He recommended two surgeons and I am seeing one of them tomorrow. As much as I don?t want to rush for a surgery, I am feeling horrible and tried different medications which don?t seem to be helping. I was hoping to see if someone had gone through this surgery and what their experience was. I have many questions for the surgeon, one of them being are there any other options beside the LINX?  I will update you with my decision soon.
Thanks for your support!
Ladymusic7

irish

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Re: Reflux and SS
« Reply #11 on: December 02, 2019, 11:28:49 PM »
Ladymusic, Oh, you have really been through the mill. As I was reading your post it made me wonder if there is some weakness in your tissues from collagen disease associated with autoimmune disease. This could sure explain the hernias you have had. I will think of you often as you go about your preparation for possible surgery. Please keep us updated on how you are doing. Thanks for your input. My thoughts are with you. Irish

Ladymusic7

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Re: Reflux and SS
« Reply #12 on: December 03, 2019, 05:36:51 AM »
Thanks Irish!
I have been through the mill! This is just one piece of the puzzle that is my life. It feels good to know that by reading these forums, I am not alone in what I am going through. Sometimes it seems so overwhelming and I become really depressed. But I try to trudge on and remain positive to set a good example for my three grown daughters. We must learn to deal with the cards we were dealt. It helps that I have two small grandchildren that help to brighten my days. I?ve been reading these posts for the last few years and just recently started to post things myself. I?m not very tech savvy and it is a lot of work to do a lot of the posts. My eyes are not the best so I have to speak the words as they type. I also noticed that everyone has a footnote which lists their diagnoses but I?m not sure how to add those to my posts? Any suggestion you could give me would be greatly appreciated.
Sincerely,
Ladymusic7

irish

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Re: Reflux and SS
« Reply #13 on: December 03, 2019, 09:16:55 PM »
Ladymusic, I don't have my diagnoses or meds listed. There wasn't time in the day. :P

I agree with you about trying to set an example for our kids. We have 3 adult boys who are starting to get old enough to worry about heart attacks when shoveling. My hubby was ill many years with several things and he had celiac sprue diagnosed in 1978 and it really gave him a lot of bad days over the years. My 3 boys are all experiencing autoimmune disease which really makes me feel bad. Bad genetics between me and hubby.

Have you ever considered biologics or immunsuppressants to help control your gastric problems. I am assuming this is related to autoimmune diseases. Just a thought. We do have to keep thinking all the time don't we. Irish