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Sjogrens and esophagus and throat burning...heartburn in chest??

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Sjogren's Syndrome
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Posted 12/10/2012 7:04 PM (GMT 0)
New to this fourm...diagnosed with sjogrens over 5 years ago. This is new I am 55 and yesterday all day had the most painful and still do today heartburn upper chest..mid-sternum..went to the emergency room to rule out cardiac and was ruled out..although the doctor felt this is my sjogrens affecting my esophagus ...I am in agony...nothing helped at the ER "GI Cocktail" pain meds..my chest and throat are burning my throat no reddness..has anyone had these symptoms..very worried!!!!
Posted 12/10/2012 10:46 PM (GMT 0)
I lived with the symptoms you're talking about from about age 54 till about 2 years ago when I elected to have Nissen Fundoplication surgery which stopped about half the problem. It had to be done because the LES (lower esophageal valve) would not close and everything backed up all day and night into my mouth and nose.

I just turned 66 and was diagnosed in April of this year. . .

Posted 12/10/2012 11:49 PM (GMT 0)
No Sjo Girl, Thank you for your response..that is a long time you suffered with this!!! Hope the surgery has helped you!!! Did your doctor say this was secondary to sjogrens affecting the valve?
Posted 12/11/2012 2:39 AM (GMT 0)
Yes, he did. Everything is secondary to the Sjogren's.
Posted 12/12/2012 12:39 AM (GMT 0)

I'm 58 yrs old.  Dx of Undifferentiated Connective Tissue Disease.  I have had Sjogren's sx for many years, including + Shirmer's (sp) but negative SA/SB antibodies and several years ago, negative lip biopsy.  Just had endoscopy for the same thing, GERD, heartburn, difficulty swallowing and esophageal spasm. I know the pain you speak of - and how it mimics heart pain.  It can very definitely be secondary to Sjogren's or other connective tissue disease.  The doctor did 2 dilations and 3 biopsies.  Fortunately, despite the inflammation found - no other pathologies were found.   Rx'd Nexium, which helped the esophageal problems, but really exacerbated the dry mouth, eyes, nasal passages, etc.  Am going to switch to Priolosec in hopes I'll tolerate that better - but the doc said I need to stay on a PPI because of the possibility of developing Barrett's esophagus.

I have found that these symptoms seem to come on like a flare - and then dissipate somewhat - but don't really go away completely.  1 yr ago I had an upper GI which found a small abnormality that shouldn't have caused the problem.  When it recurred I finally had the endoscopy - which I wish I had had years and years ago.  I have already eliminated many things from my diet because they exacerbated my symptoms.  These include citrus, tomatoes, spicy foods, caffeine, soda and alcohol except for the rare occasion.  Chocolate is another offender but I am stubbornly refusing to abide by that one.  Doc said even if you did everything right (avoid high acid foods, don't eat 3 hrs before bed, jack up the head of your bed x 6 inches, lose weight, small meals, etc. etc. it might never be enough.  Thus PPI forevermore.

So - be glad it isn't your heart - always a good thing - but I recommend getting a GI workup.   Does anyone on this forum have a problem with the PPI's causing increased dry eyes/ mouth etc?  I ended up with a root canal after 2-3 weeks on the Nexium - can't help but think there is connection......

Good luck - hope you get some improvement.    

Posted 12/20/2012 10:28 PM (GMT 0)
Welcome to our forum Sjobahn55 and No Sjo Girl. I'll give you some info from an invaluable resource, The Sjogren's Book.

Normal salivary flow is important in washing the esophagus and buffering any residual gastric acid. Reduction of saliva contributes to GERD and laryngopharyngeal reflux in Sjogren’s. I have had GERD for years and currently take Pantoprazole, which doesn’t work nearly as well as the Nexium I was on, but insurance no longer covers.

Another bit of info is that I’ve had esophageal thrush twice and was treated with an anti-fungal swish & swallow. Lupus is my primary and Sjogren’s secondary so I don’t know if it makes a difference.

 Also in Sjogren’s, thrush, which normally appears white on the tongue, appears on the tongue as grooves and red patches causing a burning sensation of the tongue. I currently have this and am taking a nystatin swish & spit. In my opinion, it's rough when you have constant burning tongue pain, but worse in the esophagus.

All things to consider. If you can afford The Sjogren’s Book edited by Daniel J. Wallace, MD, do yourself a nice thing and buy it because you’ll reference it often. Love, Butterflake

Posted 12/21/2012 7:11 AM (GMT 0)
THANK YOU ALL for the help/suggestions!!! Yes I beleive The Sjogren’s Book edited by Daniel J. Wallace, MD would be a good to have!
Posted 12/21/2012 5:48 PM (GMT 0)
We've suspected an auto-immune problem for several decades and have studied Sjogren's intensely for several years. I'm now involved in an NIH funded 8 million dollar study and a clinicial trial at a major university near me. I will be part of several thousand participants and look forward to the program starting in a couple of months.

As far as books, we've read read most of the actual good ones and we are contributors to the Sjogren's Foundation which does a lot of excellent work.

It's nice to meet both of you.
Posted 12/24/2012 5:46 PM (GMT 0)
Hi No Sjo Girl. I'm glad to hear you're part of a study- it's always great when folks participate. I belong to a CDC study for lupus. As for the 4th Edition of The Sjogren's Book it's produced by the Sjogren's Syndrome Foundation and I've found it to be a great resource. Love, Butterflake
Posted 1/4/2013 2:36 AM (GMT 0)
Lupus is primary and sjorgrens secondary for me. I have awful Gerd and take prevacid twice a day and really watch what I eat. Had several feet of small intestines removed 10 years ago and have problems from that also. I have arthritis and schlosis of neck and spine. I have never associated the Gerd and sjorgens with one another.
Posted 3/23/2013 3:27 PM (GMT 0)
Didn't make it into the study because of one little med I have to take. It was disapointing but in another way it was a relief since it lasted a year and I don't have that much patience.

I am finally on Plaquenil and so far (3 months) am not having any unpleasant side effects from it however my rheumy started me very low due to sensitivity to most meds and I appreciated that very much. I see him again in April.
Posted Yesterday 11:44 AM (GMT 0)
I was diagnosed with Sjogrens this year. I have been using the George's Aloe Vera Juice that was recommended at Health Food Store. This has worked well for me for the throat,mouth and esophagus burning.
When I stopped using the problems came back. The mouth is a new problem and I got relief instantly.
If you try please make sure you get a brand that has no taste and is natural.
The Doctors looked at me like I had 6 heads when I told them it worked for me so don't be surprised if you get the same reaction. I do order this product off line because the price is better.
These Symptoms are miserable and I was willing to try anything to get relief. Swish and hold in mouth to get the best results for the tongue burning.
I will be seeing a specialist at Duke in January and I have been waiting for 6 months for this appointment.
The Doctors that I have been to really have no interest in the Sjogrens and do not have the answers for the Symptoms that I have had and cannot connect the dots as the relation to the Sjogrens.
I have learned more from sites like this one about my different problems.
Good luck if you try the Georges and I hope it works as well for you.
Posted Yesterday 6:14 AM (GMT 0)
I have read many topics on heartburn and Sjogren's, and I have Sjogren's. For my heartburn believe it or not I eat two apples a day.
It stops my heartburn quickly. I mostly use all natural things for Sjogren's from Omega's to coconut oil to Chinese herbs and I feel pretty good. I hope this helped though who have heartburn.
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