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Pulmonary Manifestations and Sjogren’s Pulmonary Clinics

 

Many people are surprised to realize that Sjögren’s ("SHOW-grins") is the second most prevalentdescribe the image autoimmune disorder, striking as many as 4 million Americans with an estimated 3 million cases currently undiagnosed. While early diagnosis and treatment are important for preventing complications with Sjögren’s, unfortunately reaching a diagnosis is often difficult and has been found to take an average of over 5 years from the onset of symptoms, which is why the Foundation launched our 5-Year Breakthrough goal in 2012: "To shorten the time to diagnose Sjögren’s by 50% in 5 Years."

Sjögren’s is a systemic disease in which the body’s immune system mistakenly attacks its own moisture producing glands. The hallmark symptoms are dry eye, dry mouth, fatigue and joint pain, but Sjögren’s can affect any body organ or system. Interstitial lung disease is the most common pulmonary manifestation in Sjögren’s, but pulmonary hypertension, amyloidosis, cystic lung disease and MALT lymphoma can also occur in the lungs. Few studies have been done in pulmonary manifestations of Sjögren’s, and few pulmonary experts who are also knowledgeable about Sjögren’s have been available to patients. 

To change this, the Sjögren’s Syndrome Foundation is now partnering with The LAM Foundation to create Sjögren’s Pulmonary Clinics. We applaud their vision of creating these clinics to improve the care and treatment of patients. Our hope is that these clinics will provide our patients with expert specialized care and lead to an expanded interest in pulmonary manifestations in Sjögren’s and future studies that will increase our knowledge and improve future care in this field.

26 Pulmonary Clinics included in the LAM Network that will be expanded to become Sjögren’s Pulmonary Clinics.

Click Here to view Pulmonary Clinics

The Sjögren’s Syndrome Foundation is pleased to partner with the LAM clinics in this important endeavor. 


Comments

I have known for years that I have sjogrens. I found out just over a year ago that I have pulmory hypertension. I did not know this was associated with the sjogrens.
Posted @ Thursday, June 27, 2013 5:34 PM by June Johnson
June, I understand that pulmonary hypertension can also be associated with sleep apnea. My PH is significantly better according to recent tests since I've been using a BiPAP machine at night.
Posted @ Thursday, June 27, 2013 6:16 PM by JoAnn Snider
My Lungs were the first area I had problems. I heard bronchitis, asthma, allergies, etc. On top of having "inactive granulomatous disease" which was excused to various places I have lived. 6 years later I got the Sjögren's diagnosis.
Posted @ Thursday, June 27, 2013 7:04 PM by Laura Leger
I started having breathing problems after being diagnosed with Sjogrens. I now do two nebululizer treatments a day with Pulmicort and Xopenex. My 50 year old Son was recently diagnosed with Sjogrens, and though he is in exceptional physical shape, he too says he is beginning to notice some breathing issues. So there has to be a genetic link as well.
Posted @ Thursday, June 27, 2013 7:14 PM by
Very timely post. I just got out of the hospital last night from pulmonary complications. The docs could not even pronounce Sjogren's (shore-ghins). I appreciate having the list of clinics..so I can go to a pulmonary clinic where they recognize what they are dealing with.
Posted @ Thursday, June 27, 2013 8:17 PM by Sandy Burkett
It would be great to have clinic's in Canada.
Posted @ Thursday, June 27, 2013 10:53 PM by Sylvia G. Pineo
It's a shame more doctors don't recognize Sjogren's and it's severity. Many just say it's dry eyes and nose. Far from the truth. I lost half of my teeth and had lupus before found out.
Posted @ Friday, June 28, 2013 10:21 AM by Corine Peck
I truly know what you mean Corine. I was diagnosed with sjogrens last year and then lupus feb. of this year, I also have had fybromyalgia for 15 years after having a triple bypass when I was just 33 years old. I'm so exchausted unbelievably tired, can't hardly do anything anymore and I stay in so much pain. Can't hardly walk right now. Teeth problems, stomach, muscle, skin, eyes, the list goes on. Yes most doctors and people have no idea what we go through on a daily basis. It's very lonely and scary at the same time. I have grand children and only could have one son. He really doesn't understand he's busy with life. My husband understands but that only goes so far too. I pray for us all who have these diseases and have to go through such horrible things each and everyday. I just would like a better quality of life and some energy and stop feeling like i've not slept in years. May we all get some relief some how and soon, it truly takes your life away. God Bless Us All...
Posted @ Friday, June 28, 2013 3:23 PM by Debbie
Please consider putting Sjogren's clinics in Pittsburgh, PA and Erie, PA. 
 
Thank you.
Posted @ Friday, June 28, 2013 4:52 PM by Amy
Diagnosed with Sjogrens in 1983 at Shands in Gainsville FL. I've fought fatigue joint pain, nerve dammage in feet, Lymphoma in the lungs, stomach and bowell problems. 
After 2 years of Chemo, the last treatment seems to have put my Sjogrens into complete remission. The treatment was Ritoxin and Trienda. Please keep an eye on this as it is being tested in Europe as well for Sjogrens.
Posted @ Wednesday, July 03, 2013 12:56 AM by Bruce Rhea
To Debbie 6-28-13. May GOD BLESS YOU!This disaease can get to a point where you feel all is loss. All I have to hold on to is my precious GOD. May there at least be enough knowledge out there that the doctor/nurses stop looking at you as a freak. When you are suffering so much that is the last thing you need. GOD knows and will help us to see this thing for what it is. Don't give up. 
Posted @ Wednesday, July 03, 2013 1:11 AM by Terry
Just saw my Allergist yesterday. Breathing issues have gotten worse over the last year. He wanted me to take some Prednisone, I refused as I have seen to many people struggle with trying to live without it once they have been on it for any lenght of time. So my doctor wants me to take Doxycycline for a month. I was actually on Doxycycline for almost two years after first being diagnosed with Sjogrens. It put all the horrible symptoms of SS in remission except for the lung issues. Doxycycline is one of the cheapest most effective anti-inflammatories available, with no serious side effects. My doctor thinks it may help reduce the inflammation in my lungs and also may help any lurking infection in my sinuses.
Posted @ Wednesday, July 03, 2013 7:42 AM by Gwen Smith
Thanks Terry your exactly right. I couldn't make it through the day without God by my side. I just keep praying like you said that people would start trying to understand just because we may look ok, on the inside it feels like we are being eaten alive by something horrible, you truly feel like your dying. I just want my family to understand and get involved in my life I sure could use the support which would help me tremendously. But I just don't know how to get them to get it. It really hurts. I don't want to loose my family over my health. It's so lonely. My husband is the only one that gets it and I know he's gets tired of seeing me like this and having to work and take care of me the best he can. If anyone has any opinions on this or has been through family issues when it comes to sickness I sure could use the help. Thanks again and God Bless us All...
Posted @ Saturday, July 13, 2013 2:46 PM by Debbie
Debbie you recently replyed to me. you can contact me tr1018@sbcglobal.net. GOD BLESS
Posted @ Wednesday, July 17, 2013 9:39 PM by Terry R
My pulmonary hypertension is significantly better since I've been treating my severe sleep apnea with a BiPAP machine at night. For those with PH, you might want to ask your doctor if some sort of positive pressure device would improve your sleep as well. 
Posted @ Friday, July 19, 2013 12:41 PM by JoAnn
I am interested in the University of Cincinnati location. Dx with SS since 2008. I also have lymphocytic colitis, MCTD rashes, severe vertigo and now Shortness of breath. Dysautonomia may be a result of Sjogren's. I can get SOB with little activity or just talking. I hope to find a doctor who is knowledgable about the various ways Sjogren's can present. I am ANA +, SSA+, SSB+, Anti centromere +, dsDNA+, with low C-3 and C-4. There is a lot of autoimmune activity going on inside my body. Does anyone else have SOB or severe vertigo?
Posted @ Wednesday, July 31, 2013 7:55 PM by Lynne Cherkaoui
My breathing has worsened again lately. My doctor has me back on Doxycycline indefinitly. He thinks it will help ramp down the lung inflammation. Also I just read an article on Dr. Mercola's website about how extra Vitamin C can help with breathing issues. Funny thing is I had been taking a large dose of Vitamin C, but cut it out as I thought it might be making my Reflux issues worse. It just dawned on me that my breathing got worse about the same time I cut down on the Vitamin C. Am upping it again to see how it goes.
Posted @ Wednesday, July 31, 2013 8:15 PM by
Hello: I'm new this Sjogren's. Recently diagnosed after having dry mouth and sores for about 10 years, follow my dry scalp and dermatitis, grittiness and pain in eyes, etc. Sometimes it seems I cannot take a deep breath. Is that part of the lung problem? Thank you for any one that answers.  
Posted @ Friday, August 23, 2013 5:54 PM by Rebecca Wilson
I have had dry eyes and mouth for several years, I just thought it was age and chemotherapy related. In the last couple of weeks joint pain and burning pains have been very uncomfortable and alarming. A few years ago I had a severe case of Pleurisy. They could never figure out the cause. Could it had been a part of Sjogren's syndrome? Any thoughts
Posted @ Monday, October 14, 2013 1:38 PM by Ellie G
Wanted to share this with you. Saw an ENT for severe hoarseness. He told me about a product called "xylimelts". He said it was the best thing he 
 
has seen in years for Sjogrens patients with very dry mouths. You place one or two of the Xylimelts inside your cheek or gums at night, and they help promote moisture and comfort all night long. It is not a prescription it is over the counter. Am going to get some immediately!
Posted @ Monday, October 14, 2013 2:19 PM by Gwen Smith
I have enjoyed reading the information that the SS Foundation provides. I'm entering my 11 year with Sjogrens. I had to stop working 2 years ago. I'm a nurse. As much as I'd love like to be a member of the Foundation, I can't afford the $32/year fee. My medication costs, multiple specialized physicians and loss of income has put me in a position of having to decide what to spend my money on. Unfortunately information that has a fee attached to it falls last. Is there anything that can be done about patients like me? Thank you.
Posted @ Friday, February 07, 2014 6:46 PM by Kathy Owens
I'd like to add a great product for skin that burn, stings & itches relentlessly if you haven't already tried it - CeraVe. My dermatologist told me to use the cream in the jar which costs,and not the lotion in the bottle, because it works waaaaay better. It absorbs quickly, no greasiness, and no more stinging, itchy skin.
Posted @ Saturday, February 15, 2014 7:35 AM by Connie Puryear
Thank you all for your comments. I have SS, Celiac Disease, Reynauds and hashimotos thyroid.  
Besides the dry eyes, nose and mouth, I have joint pain, tightness in my chest and dizziness.
Posted @ Sunday, February 23, 2014 1:16 AM by Sindy
Doxycycline is an antibiotic, not an antiinflamatory drug.  
Been dealing with Sjogren's Syndrome more than half my life and I too have lung problems, along with other bad manifestations of the disease/syndrome.
Posted @ Thursday, April 10, 2014 10:33 AM by Janice
' I suffer from sjorens Raynauds and scleoderma Thanks for the comments Doctors dont seem to help Or listen I appreciate the products some of you have suggested
Posted @ Thursday, April 10, 2014 10:48 AM by judy gillespie
A little over a year ago I had a mass removed from my chest cavity. Went into surgery not knowing if it was a lymphoma or a thymoma, whether they would be able to proceed through VATS (robot assisted) by deflating my right lung and spreading the ribs on the right, or if I would have a traditional chest "crack" (crack the ribs and spread them...like open heart surgery). Luckily it turned out to be an encapsulated benign thymoma. I was diagnosed with Sjogrens 15 years ago and apparently this mass is generally found in people within the autoimmune cluster and it is uncommon. Thrilled to have an additional weird thing to educate new physicians about.
Posted @ Thursday, April 10, 2014 10:50 AM by Sandy
Those of you with sleep apnea using CPAP machines, did you have difficulty adjusting to the machine with dry mouth and throat? I've been trying different masks and pressures for almost a year but still can't tolerate the blowing air for more than a couple of hours before waking up gagging and very dry and uncomfortable. Any tips would be most appreciated!
Posted @ Thursday, April 10, 2014 11:04 AM by Liz
How has someone dealt with blood in ur nose/head/sinus cavities? I've never had it this bad & it started when pollen got bad. This week it's been 4 days straight & it causes migraines. I'm taking NeeiMed wash & spray gel. Thnx!
Posted @ Thursday, April 10, 2014 1:29 PM by Jeanne
Why does Doxycycline work reduce symptoms? It's an antibiotic, not an anti-inflamatory.
Posted @ Thursday, April 10, 2014 1:41 PM by Todd
For Jeanne-are you using decongesting nasal spray and/or steroid spray? If you are I'll tell you what my ENT told me (if not, it won't apply) Use saline spray right before you use any of the other type sprays...then use whatever you need to for symptoms, but substitute ointment Neosporin (or something similar) for the spray gel...right before you go to bed use a gob of the Neosporin in each nostril...if that doesn't work see your ENT! If you are having sporadic and heavy bleeds see the doc sooner than later (they can cauterize the bleeders). Also, I have always had really rotten sinuses year round...every couple of years my ENT does Somoplasty of the turbinates..the day of your nose will drip and you'll be packed with cotton, but the next morning you remove the packing and it works great (for me) for a couple of YEARS! Then you only have to worry about keeping the nasal passages moist.
Posted @ Thursday, April 10, 2014 2:23 PM by Sandy
Hi, I was recently diagnosed with Sjogren's and am having a terrible time with burning mouth. Does anyone else experience this? Is there anything that can be done about it? Thank you!
Posted @ Thursday, April 10, 2014 2:49 PM by Casey
Casey, I recently had the very same problem and didn't know what the problem was from. Now I do and hope this will help you too. If you are still using regular toothpaste, that could be the culprit - it was for me. Try Biotene for Dry Mouth or one of the other toothpastes formulated for Sjogren's. Chances are good your burning mouth will resolve.
Posted @ Thursday, April 10, 2014 4:37 PM by Connie
Does anyone know if it is possible to have Sjogren's even though the lab tests are negative for it?
Posted @ Thursday, April 10, 2014 4:47 PM by Connie
I was in the hospital for cellulitis and phlebitis last summer. I took doxycycline and amoxicillin together for over a month. While on it all my symptoms but dryness vanished. I asked my rheumatologist about it. He said he's heard of drs prescribing doxycycline, but it's not something he would do. After a month and a half after discontinuing the meds, all of my symptoms returned...
Posted @ Thursday, April 10, 2014 5:11 PM by Jenny wyman
I get infuriated when I read a post like Jenny's. I was on Doxy. for almost two years. All symptoms vanished except lung issues, which I handle very well with Nebulizer treatments each day. If my symptoms of SS returned I would go right back on Doxy. Our 50 year old son was just diagnosed with SS. He is a Doctor of Optometry, and went right on Doxycycline! 
What is the matter with doctors anyway! Grrr!
Posted @ Thursday, April 10, 2014 5:20 PM by Gwennie
Casey,Biotene also has a rinse that some people like...it's kind of viscous and makes me gag, so I don't use that. I have found that an antacid helps with the sore mouth, you can swish and spit or swish and swallow. I keep a roll of Rolaids in my purse. Connie-the blood test results can be all over the place, sometime showing nothing and other times being really high. Sometimes I've had bloodwork and it shows very low values, then the next time they will be very high. My Rheumatologist says that it's more about symptoms and the fluctuating lab values is normal.  
Posted @ Thursday, April 10, 2014 5:31 PM by Sandy
Connie, thank you sooo much. The burning is so bad. It hurts my throat and ears and lips and the roof of my mouth. I am 32 and I just keep thinking I can't live this way forever. It is torture. I just started using Biotene toothpaste two days ago. I was using some type of organic stuff from Whole Foods. It has come and gone sonce my diagnosis in January but I don't know what makes it start or stop. Thank you for giving me hope that it can be resolved because I feel lost right now and usually I am miss peppy. So this is hard. 
 
Sandy, I will try that rinse. Thank you for recommendation! When you swish the antacid. Do you mean suck on it or chew it and swish it around? Thank you again! 
 
Casey
Posted @ Thursday, April 10, 2014 6:45 PM by Casey
Regarding Doxycycline. My Allergist asked me to go on Doxycycline for one month to help the inflammation in my lungs. It is one of the Best, and Cheapest Anti-inflammatory drugs available. They have renamed it Oreacea, and use it for Roseasa (sp) and charge a fortune for it.
Posted @ Thursday, April 10, 2014 6:59 PM by Gwennie
Sandy, thank you very much for responding about negative labs and Sjogren's - I've been wondering for quite some time now.
Posted @ Thursday, April 10, 2014 7:08 PM by Connie
Casey-I usually just suck on the tablets (usually out and about somewhere) if your throat is also burning then I would swallow the liquid. My mouth seems to burn if I drink alcohol, hot sauce and cinnamon. You will find as you go down this journey that your symptoms will not be exactly like anybody else's. To me the thing that sucks most is looking healthy but feeling bad, listen to your body and speak up if something doesn't feel right.
Posted @ Thursday, April 10, 2014 7:19 PM by Sandy
Sandy, thank you. You're right. I already realize people don't understand. It is hard but I am hoping I quickly learn to live with it gracefully. I appreciate your tips!!
Posted @ Thursday, April 10, 2014 7:34 PM by Casey
I'm so thankful I found this blog. This is such a lonely disorder. My husband is so patient and kind but I know he doesn't understand what I feel like on a daily basis. It is very difficult to describe. Sjogren's has changed my life and I really feel like I don't have anyone to talk with about it. Thank you all for posting and helping me realize I'm not alone. I pray that God will help all of you!
Posted @ Thursday, May 29, 2014 2:18 PM by Luanna Carter
I have been diagnosed w SS by one rheumatologist, but not by the other.I have dry eyes, dry mouth, dry scalp, dry skin, depression, cognitive impairment, low energy, and now GERD acid reflux, post nasal drip, asthma (bronchitis), and laryngitis, dry cough, and sore throat that don't seem to want to go away. I have taken antibiotics, antifungals, oral steroids. I have been drinking lots of water, recently using a humidifier and nebulizer, taking proton pump inhibitor for acid reflux, Guess i have SS and it is promoting this cycling problem of sore throat, sinusitus, GERD, laryngitis... any ideas about what to do?
Posted @ Monday, June 23, 2014 12:25 PM by Kate New
Kate-is the current rheum. the one who diagnosed you or the one who didn't? The lab tests that mine does every 4-6 months can look a bit alarming. I expected that with treatment my sed rate and ANA factors would decrease.....but that didn't seem to be the case so I asked. He said that he uses the tests to monitor the progress, but I shouldn't expect them to decrease significantly. Someone else made a comment about prednisone, I have been told that using it during a flare-up, while waiting for other drugs to kick in is not a big problem...the problem seems to be when you need to use them long term, I have known people who attributed bone loss and muscle mass loss to prednisone use, I don't know whether that is true or not. The best thing any of us can do for ourselves is finding doctors who understands (both primary and rheumo plus dentist and Optho...and any symptom specific other doctors)and isn't threatened by asking lots of questions. It's easier finding those people if you live close-ish to teaching hospitals, but if you have to travel some distance, try to coordinate all visits.
Posted @ Monday, June 23, 2014 9:11 PM by Sandy
Good to find a site where people KNOW what we go through. I have Sjogrens. I had many symptoms WAY before having it show on blood tests. I started seeing a lung specialist 4 years ago due to a cough that I couldn't get rid of. My family doctor treated me for bronchitis with 2 rounds of antibiotics to no avail. He sent me to the lung specialist. I have been diagnosed with Bronchiectasis......(a condition in which damage to the airways causes them to widen and become flabby and scarred) due to Sjogrens!!! I have it all...dry eyes, dry mouth (horrible at night-hoping to try the Xylimelts),exhaustion, shortness of breath, dry cough. I had a mycobacteria and just finished 14 months of triple antibiotics. WHEW! I am on "all the meds I can give you",according to the Dr. It is a day to day life. Luckily, I'm not in pain. My biggest problem is the "out of breath" feeling with simply walking to the kitchen or putting a load of laundry in the washer/dryer. Normal daily routines are done VERY SLOWLY with lots of "rest time" between activities. Hope you all feel the best one can with SS.
Posted @ Saturday, September 20, 2014 10:19 AM by Ruth Garcia
I get terrible dry mouth during the night. I tried chewing gum all night long seems to help make the salvia flow better. Strange, but I guess I chew all night and certainly is better than waking to my tongue being so dry.
Posted @ Wednesday, September 24, 2014 3:08 PM by Char
Hi. I have Sjogren's. I have breathing issues and no clinic which deals with this specific symptom. It feels like congestive heart failure as I also have edema pooling in my ankles. I do have an enlarged right atrium. Chest xray is clear. ecg is ok. I am from the Niagara Region of Ontario, Canada. Anyone know of a good pulmonary clinic to go to? I was thinking about the Firestone Clinic at St. Joes in Hamilton.
Posted @ Monday, October 20, 2014 5:01 PM by Catherine
I've had moderate to severe Sjogrens for over 10 years, Celiac, and Dermatitis Herpetiformis, chronic sciatica, very low blood levels, shingles then postherpetic neuralgia. I couldn't bring myself to go the drug route, and instead have found that Stinging Nettle extract (liquid and pill form) has helped enormously. I found an article about a 10 year study on Stinging Nettle that determined it acted much like Enbrel, only with no side effects. I also take a high quality Vitamin B complex for nerve pain, and that works well, too. No wheat and zero sugar help, too.  
Posted @ Friday, October 31, 2014 10:17 PM by Suze
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