excessive sinus mucus

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chikadee
New Member


Date Joined Apr 2013
Total Posts : 7
   Posted 5/29/2013 11:51 PM (GMT -6)   
Does anyone with sjogren's suffer from really really excessive mucus?  I have so much I cough and gag and suck it down and up  45 min to an hr. both morning and in the evening.  I've been to a Ent and use all the things available like neti pot(useless) with this much mucus.  I spray my nose frequently and drink ton's of water.  No dairy or cheese (maybe very small amount occasionally).  The only thing that will stop it is prednisone which I obviously can't be on all the time.  Been tested for allergies and all were negative. 
 
Just curious if anyone else with this disease has this problem also. No Dr. has been able to help me this started after a serious sinus infection about 9 yrs. ago.  I'm not sure if there is a connection with sjogren's.

Butterflake
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Date Joined Jun 2006
Total Posts : 1402
   Posted 5/30/2013 3:50 PM (GMT -6)   
Hi chikadee. I know Sjogren's can cause destructive crusting in the sinuses from drying that can lead to sinus infections. Water is essential for allowing the passage of thick, crusty material down into the mouth. Humidifiers and saline replacement is also necessary to prevent this nasty, crusty stuff. Never use nasal decongestant sprays or antihistamines because they dry even more. Use saline sprays and hot, steamy showers to loosen the mucus.
 
After many sinus infections, one of my sinuses scarred over and the opening was completely blocked so I had to have surgery to open it. While it was blocked the pocket became a little cesspool breeding all types of bacteria.
 
I still get post nasal drip, but it's not a problem. I hope this helps chikadee. Love, Butterflake
Lupus '05, Sjogrens, fibro, major depressive disorder, CNS problems, GERD, colitis, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

chikadee
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Date Joined Apr 2013
Total Posts : 7
   Posted 5/30/2013 5:34 PM (GMT -6)   
 
 
Thanks Donna.  I too have Lupus and fibromyalgia.  My sinus problem is loose to thick mucus that clogs up not only my sinuses but my throat.  I sometimes have trouble even swallowing pills.  I do drink a lo of water and as you said no antihistimines with my high BP. 
 
I have had a lot of dental issues too, I wonder if that goes along with sjogrens?
 
Thanks for your response, everything helps a little!! wink

Butterflake
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Date Joined Jun 2006
Total Posts : 1402
   Posted 5/31/2013 8:00 AM (GMT -6)   
Hey Chikadee. Trouble swallowing is a very common problem with Sjogren's. For a person with Sjogren's it usually indicates that the salivary glands are producing less saliva. And yeah, to quote my Sjogren's book, the salivary glands and saliva, protect, lubricate, clean oral mucosa, maintain a neutral PH and aid with taste and digestion. Normally, little saliva is produced during sleep so those of us with Sjogren's get severe cotton mouth in the morn. I use Biotene Oral Balance gel (OTC) each night before closing my eyes and sometimes wake during the night, take a sip from my water bottle and use more Oral Balance.
 
I'm absolutely the worse person to preach about dental hygiene. I brush, floss, and use ACT mouthwash which helps build enamel, but it's been over two years since I've seen the dentist. I just hate to go. I have a BS in Medical Technology (lab) and microbiology is my forte, so I of all people know what's growing in our mouths. (Bacteria next to the tooth surface produce acid.) Saliva replenishes calcium and phosphate ions as they are lost from the tooth surface. Basically with decreased saliva your teeth rot.
 
As a side note, the first ENT I saw since symptoms began really didn't know squat. A nurse told me about her ENT and he's the doc who did my surgery. He would not perform the surgery until I bought a device that one sticks up their nose as it produces a fine mist of sterile saline. I hated buying the thing and I hate using it, but it sure works. Have you considered changing ENTs? Love, Butterflake
Lupus '05, Sjogrens, fibro, major depressive disorder, CNS problems, GERD, colitis, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

Sparkle01
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Date Joined Jun 2013
Total Posts : 4
   Posted 6/6/2013 10:37 PM (GMT -6)   
yeah don't really know if this is related to sjogrens or not but when all of this came to a head for me I had all that heavy stuff going down my throat. Told it was sinusitis and would have to live with it. Well did some research and found oregano oil from health food store and it almost immediately took that mucus away. You can put a few drops in a glass of anything and drink it and you can put it in some boiling water and put a towel over your head and let it get into your sinuses that way also. Hope this helps you, I know it did me.

Sparkle01
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Date Joined Jun 2013
Total Posts : 4
   Posted 6/6/2013 10:40 PM (GMT -6)   
Oregano oil is a great relief for the sinus mucus problem. Inhale in hot water with towel over head and also ingest a few drops in a drink of your choice. Worked wonders for me.

chikadee
New Member


Date Joined Apr 2013
Total Posts : 7
   Posted 8/5/2013 9:03 PM (GMT -6)   
Donna what is the device you spray up you nose? Is it just a bottle of saline spray?

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1402
   Posted 8/7/2013 5:24 AM (GMT -6)   
Hi Chikadee. I have a portable machine called the Omron CompAir XLT. There are other Omron nebulizers on the market. I haven't used mine in forever, but it works by pouring about 10 ml of sterile saline into a vial that connects by a hose to the nebulizer. Once you pour the saline, you place the clear pointed cap on top of the vial. When you turn on the machine air runs from the hose to the vial and a fine mist of saline is produced. You place the pointed cap in a nostril and breathe normally. As your sinuses clear, you'll taste the saline in your mouth. I used to snort mine instead of breathing normally and it quickly cleared my sinuses.
 
Currently my pulmonologist has me take 2 puffs of Nasonex in each nostril twice a day, oral Mucinex 600 mg twice a day, and one Claritin each day. This is working well for me, but if this ever stops working and my sinuses block, I'll also use the Omron CompAir.
 
Let me add that when the left sinus in my cheek closed, surgery was the only option. While it was closed that sinus, which was filled with bacteria, was giving me a constant sinus infection. I felt like poo in addition to the usual Lupus, Sjogren's, Fibromyalgia, etc. The surgery was very successful and I felt so much better after it. I still occasionally get infections in the right sinus. I hope this helps! Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

chikadee
New Member


Date Joined Apr 2013
Total Posts : 7
   Posted 8/7/2013 1:58 PM (GMT -6)   
Thank You Donna for the information. I just got done having a nearly 2 hour coughing , snorting and gagging session, not fun! I am going for a breathing test today, and will follow up next week with the Dr. Hope they find a way to help me get this under control.
Thanks for your help!

Barb J

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1402
   Posted 8/8/2013 9:36 AM (GMT -6)   
Hi Barb J. Wow, you are having such a rough time! I'm so sorry for you. Mucinex is available in stores and I highly recommend you buy some. I was recently having terrible post nasal drip that was so thick it would catch in my throat. Like I said, my pulmonologist told me to take Mucinex twice a day, every day. I take the 600 mg, but there are other doses. Mucinex is Guaifenesin and as the box says, it "thins and loosens mucus." You can start taking this now so you'll have some relief before you go to the doc. (((((HUGS))))) Love, Donna
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

chikadee
New Member


Date Joined Apr 2013
Total Posts : 7
   Posted 8/8/2013 11:47 AM (GMT -6)   
Thanks again Donna, I will try mucinex again, I tried it in the past and found it to be drowning me in mucus. My mucus would release al at once and I would be choking. I'll try breaking up the dosage so it's not loosening it all at once.

TY

cccourt
New Member


Date Joined Jan 2014
Total Posts : 1
   Posted 1/2/2014 11:38 AM (GMT -6)   
New member: Amazed about my dx. I have suffered symptoms for over 20 years. I am 71. My rheumatologist says this is not unusual. That being said, I am taking pilocarpine...using 1/3 less than prescribed. Horrid side effects taking three per day. Can tolerate the 2 per day. I was so completely without mucous (for years) I am wondering if the production of mucous is what causes the thick phlegm. I wake up about 2:00am, and I have so much phlegm I am afraid to go back to sleep. I think it may block by esophagus if it continues to be generated. Is this an idiotic fear?

For the record, was dX with fibromyalgia over 20 years ago, crusty eyes over 20 years ago, Raynaud's less than 20 years ago, psoriasis about 15 years ago, and salidienitis 5 years ago. Have suffered sinus infections most of my adult life. Living "west of the Mississippi" I was told many years ago. I make myself walk my treadmill 3 days a week and I do Pilates about 3 to 5 days a week. I do not ache but for various old injuries. Upon dX of Sjogren's the rheumatologist says I do not have Raynaud's as my toes nor fingers exhibit the red/purple discolorations. As stated above, there is a new thing daily since I have taken the pilocarpine. Is this normal?

vferrell
New Member


Date Joined Jan 2014
Total Posts : 1
   Posted 1/10/2014 11:23 AM (GMT -6)   
I also suffer with excessive mucus but have not been able to find a solution. The ENT told me Thursday that she could not do anything else to help me. I had a CT-scan and she said everything looks good but the problem continues. I find myself sniffing and snorting all the time. This has been going on for a year now. So frustrating that I don't know what else to do. Has anyone else had this problem? And if you have, have you found a solution. Please help.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1402
   Posted 1/16/2014 12:44 PM (GMT -6)   
Welcome to our forum cccourt and vferrell. I spoke with my doc again recently about this and was told the same answer. Take Mucinex (not DM) twice a day to thin the mucus and drink plenty of water and fluids. I keep something to drink by my side all day, water in my car, and a travel mug of water by my bed at night. Read the rest of this thread for other ideas.

Stop by our forum anytime even if it's just to vent. We all need that now and then. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

Thunders Mommie
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/27/2014 3:54 PM (GMT -6)   
Hi I found you by plugging in mucous and Sjogrens. I have fought excessive mucous that chokes me mostly at night for about 2 years. In the last year I have started with the excessive dry eyes and mouth. I am diagnosed with FM and have the pain and excessive tiredness plus sleep issues from that. I have been taking Guafenesin for at least 6 months and it does help but not completely. I can remember for most of my life having choking panic in the middle of the night where I wake finding I am leaning over the side of the bed. This has not happened since the Guafinesin. I have been working with my eye doctor to get to the bottom of the dry eyes, but despite plugs continue to have excessive dry eye. I have an appointment with a Rheumatologist for May to try to get a diagnosis. I do hot wet rag massage several times a day and Refresh Lubricant eye drops for sensitive eyes he also wanted me on a high dollar eye drop but I do not have prescription insurance. I also use a eye jel at night. I can get meds a lot cheaper in Canada but wonder what else you recommend for eye relief. I live in west Texas and it is extremely dry here. I was just diagnosed with Intercystial Cystitis and I have extreme gerd, diverticulitis and IBS.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1402
   Posted 3/29/2014 9:50 AM (GMT -6)   
Welcome to our forum Thunders Mommie. I like your screen name. I'm sorry you're having so many problems and don't have insurance. Be sure to check out the Affordable Care Act so hopefully you can get at least some insurance.

I take 600 mg of guaifenesin in the morning and at night before bed. I really don't have any advice for your eyes since you can't get prescription eye drops. I use Blink gel drops which are OTC, but you need to find what works for you. Let us know how your appointment turns out okay? Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

searchin4answers
Regular Member


Date Joined Nov 2013
Total Posts : 35
   Posted 5/24/2014 9:07 PM (GMT -6)   
I have read somewhere that sjogrens is linked to excessive sinus problems. It had something to do with the lack of moisture in our sinuses. Because we do not make enough moisture, the sinuses are prone to infections. These infections will need to congestion as our bodies try to fit it off. It might be a stretch, but I think its a yes. Sinus rinsing might be a necessary process for those with SS....

jamieharris1790
New Member


Date Joined Jun 2014
Total Posts : 8
   Posted 6/11/2014 9:15 AM (GMT -6)   
I got balloon sinuplasty done by my ear, nose and throat doctor in Houston http://www.thesinusdoctor.com/allergy.html and it's all so much better now. The feeling of the stuffy nose and being unable to breath was just horrible. My friend uses spring pollen and I gave it a try from her but didn't work. But you can try that. If none of the natural things work you might want to go ask your sinus doctor. Also try warm compresses for sure, not cold.

searchin4answers
Regular Member


Date Joined Nov 2013
Total Posts : 35
   Posted 6/12/2014 12:58 AM (GMT -6)   
Really? I mean I am literally about to fall out of my chair right now. I have been suffering with excessive mucus that just sits in my sinuses behind my ears for months now! It hurts a whole bunch and I believe is infected.. (because of the pain and warmth around the back of my neck and deep behind my ears) I have spoken to the doctor about it and the only thing she could find wrong with me was a flare of my SS antibodies.. she's a GP, so thats as far as that went.

I do feel a little better when I drink detox tea or a lot of water, but it doesn't ever really clear out completely. So I sit in a lot of pain and have headaches. After reading this post I am ready to take a hot shower, inhale oregano, and swallow some mucinex with a gallon of water. =)

finallyadiagnosis
Regular Member


Date Joined May 2013
Total Posts : 24
   Posted 6/12/2014 3:25 PM (GMT -6)   
I am so sorry to hear you are suffering with excessive mucus/sinus issues.  This was the first symptom I had over 20 years ago which NONE of my drs picked up on until 2 years ago I became excessively tired, had heart palpitations, unexplained anemia, only to name a few of the symptoms was experiencing along with the mucus and chronic sinus infections.
 
Unfortunately I have to take antibiotics off and on for sinus infections and I do take mucinex (not the DM as someone else stated - too drying for me), but I also use saline sprays and use zyrtec now.  It has all helped but certainly does not take the issues away.
 
I hope you find some answers and some relief soon.
 
Sending positive thoughts your way.

searchin4answers
Regular Member


Date Joined Nov 2013
Total Posts : 35
   Posted 6/13/2014 12:45 AM (GMT -6)   
I have been told to do all of these things in the past 15 years, but no one could identify why I needed it. I didnt have allergies- I was just hyper sensitive. My eyes weren't dry, I was just wearing the wrong type of contacts... It all makes sense now.

ElainefromMJ
New Member


Date Joined Sep 2014
Total Posts : 4
   Posted 9/9/2014 7:33 PM (GMT -6)   
I am so glad to have found this forum. I have Sjogrens, Hashimotto, GERDS and allergies. I had sinus surgery in January (sinus cavity enlarged, turbinates reduce). I get weekly allergy shots, take Nasonex and Astipro nasal sprays daily. I try to do without oral antihistamines. I use saline lavage every day, three times a day. Despite all that I do, I have copious amount of mucus. I've began to wonder, if my mucus situation was related to the Sjogrens. I've often read about the drying effect of the disease, never thinking the thick mucus may be the drying effect of the disease. After reading this thread, I will definitely try oregano oil, and Mucinex. Can you tell me if Mucinex is a part of the daily routine for many, and if so, what is the down side of taking it every day.
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