Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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Sinus problems with Sjogren's??

Quick question. Has anyone heard of constant sinus congestion/drainage being a Sjogren's related issue? I only ask because I've had a slew of symptoms over the years, most of which have been explained with this diagnosis, but the sinus thing is still kind of a mystery. I haven't seen anything in the literature that suggests these things are linked, but I thought I'd get the opinion of the people who know. ;) Any of you experience sinus issues with this disease? Just curious.

Replies

lucy-wattle
lucy-wattle

I am after the same answer. I have had constant sinus for years now. Apparently my Sjogren's came from radioactive iodine treatment for an over active thyroid. DR said that iodine was taken up by the salivary glands.
deleted_user
deleted_user

I don't know what is causing it but my sinuses drain down the back of my throat when I try to sleep. Everytime I eat my nose drips(weird). I get sneezing spells. My sinuses are always in action. I think it is because of ss. Everything on me inside & out is dry except my nose.
GailSK
GailSK

One of the first things I read about Sjogrens was that sinus problems went with it. I had raging sinus infections for 4 or 5 years before the Sjogrens became a problem. I had a blocked sinus, so I had surgery to fix that. Immediately after the surgery I felt like the faucet had been turned on! I have found that not eating dairy foods eases the flow somewhat, but lately it's gotten worse! My drainage causes me to cough, choke, and keeps the Kleenex industry healthy. My nose also drips. So embarrassing! In mid-conversation or at dinner, I suddenly feel the drip on my upper lip, just like all the elderly ladies in the alzheimer's facility my mother used to live in! If I eat even a bite of a cream sauce, it's even worse. I recently had a blood test that is supposed to show all the foods I'm sensitive to, so I plan to try to change my diet to see if that works.

Good luck!
kevsgirl9797
kevsgirl9797

Well I guess it's good to know that I'm not alone! lol I've said the same thing Cindy, that this disease dries up everything except what I want it to!! I'd love for it to dry up my sinuses, my oily skin and hair, and my excessively sweaty armpits (sorry, maybe TMI)!! I live in the Ohio valley, and allergies are particularly bad here, but even when I was getting allergy shots (for over 3 years) the drainage was the same, so I figured it wasn't being caused by allergies. Now I know it's just one more thing I can chalk up to SS and that I'll just have to continue to deal with. Thanks guys!!
deleted_user
deleted_user

Very interesting. I've had issues with recurring sinus infections for as many years as I've had the other Sjogren's symptoms.

Also, I too, had the radioactive iodine treatment for a hyperactive thyroid. I actually had to have it done twice because they did not destroy enough of the thyroid the first time. I never thought that could have anything to do with the Sjogren's. I just learn something new everyday on this site.
lynnedavidson3
lynnedavidson3

I have problems with my sinus, though not quite as severe as some here. I finally figured out something that helps! I run a humidifier at night. I started warm water therapy a couple of months ago, and very quickly noticed how the humidity helped.
It is not a cure, but it does help. A little eucalyptus oil is very nice.
deleted_user
deleted_user

I'm another SS patient with sinus issues! Congestion and drainage, and everything else is SO dry. I do have allergies, so take allergy shots, use Nasonex steroid spray and Astelin antihistamine spray (not drying like taking oral pills i.e. Benadryl), but I still should own stock in Kleenex.
GailSK
GailSK

One thing I do that seems to keep congestion to a minimum, particularly chest congestion, is take Mucinex every day. I thought it wasn't helping until I ran out and quit taking it for a few days. I woke up in the mornings with a stuffy nose and thick gunk to cough up. It may also cause the drippy nose to be worse, but it didn't seem any different when I wasn't taking them. I also took Flonase and Astelin, but I had to stop because they were causing my nose to bleed. Stopping those meds made no difference at all...Has anybody tried QNasal?
deleted_user
deleted_user

Sinus and lungs can all be dried out from SS. I have both. You can get pain from both. I used to get post nasal drip but think I am too dry for that now. Used to get pretty bad sinus headaches and just plain old dryness pain from my sinus's. Those have gotten better. The humidifier (I prefer the warm vapor) in the dry months certainly has helped me tremendously. We have moist summers (I live in VA), so I really only seem to need the extra humidity in the winter when it gets very dry here. Try the vaporizer route for the dryness. I think you will find relief. Just make sure you keep the vaporizer clean because, with SS, you will not have the extra filters in your noise and mouth that a normal person would have, so you have to be more careful than the normal person in what you breath in.
Janda
Janda

Add me to the group of sinus sufferers! I live in Florida where the humidity helps except every place is frigidly air conditioned.
deleted_user
deleted_user

I have sinus plus many other problems that I am sure are a result of having sjogrens. I recently saw an ear, nose and throat specialist who suggested that use a netti pot. To my surprise it does relieve my sinus and ear symptoms.
Jenna77
Jenna77

I recently had a ct scan that confirmed chronic upper sinusitis. My nostrils will be so dry that I get sores, but I am always stuffy elsewhere. I have been told this is directly related to SS. What my ENT suggested to me was: take Mucinex-D (what's behind the pharmacy counter) twice daily as needed and use Ayr saline nasal spray and gel together. The spray reaches the upper sinuses and grips onto the hair follicles on the way, and the gel is healthier than using say Vaseline. Since using this combo I have notice a tremendous difference. Oh yeah, and to use a humidifier 24/7 to keep the air moist.
deleted_user
deleted_user

I recommend using a Neilmed Bottle (better than a netipot, I've used both) to help with sinus issues. I use it every other day and it does help; gets pollen, gunk out of your sinuses. I use distilled water. It's easy and quick, worth the effort. I noticed a difference over time...it's not a one time and instant results thing.
deleted_user
deleted_user

I feel like my chronic sinus infections (and the multiple antibiotic treatments for them) actually caused my SS. Had the sinus infections most of my childhood and by my teen years already had some of the symptoms, although I was not diagnosed until many years later.
deleted_user
deleted_user

I've had significant sinus problems since 2002, although I wasn't diagnosed with Sjogren's until just a few months ago. I spent a lot of time doing research, trying to find out why I had all kinds of thick, sticky substance in my sinuses, but the best information I could ever find was a forum where people were encouraging a person with a similar problem to stop smoking. Except I've never smoked in my life. Never even experimented with it. Bleh! Numerous allergy pills, Mucinex, prescription things, sinus rinse, nothing ever helped for very long, if at all. I finally dumped all of it, and even that made me feel better temporarily.

It all started with excessive throat clearing at long intervals, then it progressed to coughing spells, sometimes gagging because I couldn't make the tickle in my throat go away. My nose never runs the normal way, where I have to blow my nose and that helps. Nope, it's always the post-nasal drip, but without the actual drip. It just gets stuck back there and won't go away until I gross myself out by making it go away. I sound like an 80-year-old man. It's embarrassing!

I finally realized my sinus problems are BECAUSE of the Sjogren's. The stuff gathers in there and doesn't drain out like a normal person because I don't produce enough moisture to thin it out appropriately.

Knowing this doesn't really help the problem, of course. The Biotene toothpaste helps some - I hardly have any coughing spells anymore. And of course, I drink a whole lot more water. As for the rest, I just have to shut my door and deal with it when it overwhelms me.

After a while, I finally put it to