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Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s Pulmonary Manifestations and Sjogren’s Pulmonary Clinics
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Posted on Thu, Jun 27, 2013
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Many people are surprised to realize that Sjögren’s ("SHOW-grins") is the second most prevalent 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.
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Topics: Pulmonary manifestation, Sjogren's, Research, 50in5: Breakthrough Goal
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June Johnson 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.
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June Johnson 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.
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JoAnn Snider 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.
JoAnn Snider 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.
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Laura Leger 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.
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Anonymous 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.
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Sandy Michaels I would like to know if any Sjorgens patients have low SaO2, and does anyone with this on Oxygen?
Cheryl Two and a half years ago I was diagnosed with interstitial lung disease secondary to Sjogren's. My SaO2 would drop below 80% with activity. That was my first diagnosis of Sjogren's. At that time I was put on O2 24/7. I was fortunate to find a great pulmonologist who put me on Prednisone and Cellcept. I was diagnosed in Dec, and by the following Sept, I was off of the O2. I was able to taper off the Prednisone until just recently, when the inflammation flared. But for the most part, the Cellcept has controlled the inflammation in my lungs.
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charlie barry Thanks for your reply. I have an appointment in Pittsburgh ,at a sjogrens clinic in the upmc interstitial lung institute in april. Hopefully they come up with something. I'm only on oxygen when I excert myself. Sitting still, I'm fine. Best of luck to you and you're in my prayers.
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Brenda Yes. I was diagnosed with Sjogren's 6 yrs ago. Aggravating dry cough, sats were getting lower when in for a doc visit. Then told I needed to wear oxygen (first at night), now all the time. I had a sleep study but did not have sleep apnea. My right heart pressures are elevated & a echocardiogram 3 1/2 yrs ago was abnorma. Recently, my cardiologist told me he's had 6 Sjogren's patients & they were all on oxygen. I take mucinex about 3-4 times a day to keep my secretions thinner.
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Sandy I would like to know if any Sjorgens patients have low SaO2, and does anyone with this on Oxygen?
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Anonymous 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.
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Sandy Burkett 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.
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Sylvia G. Pineo It would be great to have clinic's in Canada.
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Andi Brandsma-Kennedy Are there none in Canada? We definately need them
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Corine Peck 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.
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Corine Peck 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.
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Susan Massey You are absolutely correct Corine. My mother died last week from what the docs said was lupus related. She also had sjogrens. She has lymphomas on her spine. Why do doctors or even spouses not recognize the severity of this desease. My sister died in Jan 5, 1991 from lupus complications because the doctors did not react. Instead they chose the excuse of stress. I could go on and on. I would like to express my strong feelings on awareness. I had to force my Rheumologist to run the test i needed and I thank the SSF for the knowledge needed to do this. I had 2 teeth break off at the gum and now I know why because of the SSF. My opthamologist ended up making the diagnosis. Any helpful information is gratly appreciated. The only thing my rheumologist is doing now is monitoring my pain which is extreme at times. I am 62 years old and even though that does not seem that old i am not as worried about myself as I am for my children and grandchildren. We need help to find a cure or even just a medicine that will help us fight this dreadful disease. I have another sister that has both lupus and sjogrens who is at this moment fighting for her life again. She is strong and a fighter working with the lupus foundation to find the help they need as well.
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Dong Wong My daughter was dx with Sjogren's in 2011. After her dx we took a homeopathic approach, and moved to a liberal state to treat her with THC, and other natural drugs. Unfortunately her dz progressed rapidly, and she developed a drug problem. Now she is also a drug attic. She lives on the streets, and we only hear from her when she is arrested for prostitution, or admitted to a hospital. Just a note as to what a vicious dz Sjogrens is, and how it can ruin a life. Bottom line we need public awareness, so money can be set aside to find a cure. Dz's like breast cancer, and HIV get all the airtime. The public needs to know about this dz, so we can get the pharmaceutical companies to start searching for a cure.
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Debbie 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...
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Maggy Sanchez Oh Debbie , I know what you mean . I'm a Lupus, Rheumatoid Arthritis, Hughes synd, Raynaud's and Sjorgren's patient. This past yr since aug 2014 , I had been with of the longest flare up I had. And I feel so bad for my son and my husband taking care of me for almostv everything. Sometimes I feel so desperate with pain and short of breath that I almost lost faith . This week is my app with pneumo, last week my rheumy and cardio. Every week there is someone and I'm sick and tired feeling unable to go on. But they tell me to wait, this will go down. I just hope so.I've seen some recuperation but then I try to go back to my life and pain and inflamation come back. Hope u find a way to feel better. If I do I' ll share it!
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Anne Ostrom I also have RA, Sjogren's and fibrimyalgia. I was diagnosed about 13 years ago. Since r hen treatments have improved and new drugs have been created. That is where my hope comes from. If I stick it out long enough there will be a cure for me. Think of yourself as a person first and not a patient. You are not your disease. Yes there are challenges but live as much as you can and be patient.
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Sally Anne...I've had so many symptoms that prompted my doctor to do blood work. Red flags in many test that all seem to point to Sjogrens. I have an appointment coming up on the 29th and I am hoping and trying to keep my faith in tact. Thank you for your very uplifting comment. That positivity is what I needed to hear right now. I know there will be challenges that are ahead of me, but I refuse to go down without a fight! And I only want to move forward my faith and trust in God that my body will be restored and that I will have a full and happy life! Thank you!
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Some additional information in one line
Amy Please consider putting Sjogren's clinics in Pittsburgh, PA and Erie, PA. Thank you.
Bruce Rhea 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.
Carina Hi, uncle Bruce! God bless you during your battle! I have found for mine that minding gluten and dairy had helped tremendously. I still have ocassional lung issues (super cold a/c and super hot & dry don't help) but I do drink A LOT of water to help the lungs flush out what they normally cannot.
Debra Sylvestro I also have, RA, Sjogrens and a form of Lupus. I had a medium read me and told me that I had to change my diet to gluten free and I will feel 100% better, she had no idea of my auto-immune diseases. I unfortunately have not done that as of yet. I am very set in my ways and love my carbs.
Carina @Debra Sylvestro - Did you try going gluten free yet? If so, did it help? I did find it helped calm my gut issues I had in 2012 tremendously. I lost 27 pounds that year in 8 months without even trying & I resembled a scarecrow. It was scary. Then when I went gluten free, the gastric issues subsided and my weight went back up. Unfortunately now I am having some extreme breathing issues that are intermittant somehow. Breathing well one day; next day walking up 7 steps exhausts me so badly I feel like I need to lay down & take a nap. I also have pretty intense neuropathy in my fingers & toes that comes & goes. And I feel like for 4 days now I have socks on up to my lower calf though there is nothing there. The fatigue & brain fog can ne bad some days. Nothing seems to be a 100% surety by my doctors and I am considered very MILD with this syndrome. It's blowing my mind! Sadly, my uncle Bruce who wrote a response above died last night due to pneumonia that was from his Sjogren's-induced lymphoma. These symptoms are wild. They come & go and doctors cannot seem to keep on too of them. I can tell you, though, if you or anyone here experiences breathing issues, DO NOT wait until it gets worse. Some of this damage is completely irreversible, especially for the lungs.
Terry 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.
Gwen Smith 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.
Debbie 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...
Terry R Debbie you recently replyed to me. you can contact me
[email protected]. GOD BLESS
JoAnn 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.
Lynne Cherkaoui 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?
Anonymous 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.
Rebecca Wilson 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.
Ellie G 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
Ellie G 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
Gwen Smith 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!
Charlene Robinson Xylimelts are fantastic!
Jan Kyker Buy the Xylimelts on line through Amazon. Much cheaper than in a drug store. THEY DO HELP TREMENDOUSLY!!!
Kathy Owens 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.
Connie Puryear 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.
Sandra I use coconut oil on my skin. It takes a few minutes to soak in and then lasts for a couple of days. I love it and it is natural.
Sindy 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.
Sindy 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.
Janice 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.
lucy jackson there are several antibiotics that have significant anti inflammatory effects. Doxy is one, Keflex is also an example of another. Thankfully, they are not just antibiotics. Some are used off label for other reasons, such as doxcycline and decacycline are used by the renal docs for patients that have low sodium and need to get their Na levels back up. They are also antibiotics, but not uses as such in these cases.
judy gillespie ' 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
judy gillespie ' 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
Sandy 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.
Liz 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!
Sharon Do you have a humidifier attached to your C-Pap? I actually put in a piece of Spry gum before I hook up. I chew it a little and stick it on a back molar. Works like a charm and no I have never swallowed it.
Nancy Heinemeier Liz, I use a CPAP with a humidifier. The extra moisture makes it possible for me to sleep comfortably. I also use Xylimelts which help to keep my mouth moist. I hope this is of some help.
Jeanne 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!
Todd Why does Doxycycline work reduce symptoms? It's an antibiotic, not an anti-inflamatory.
Todd Why does Doxycycline work reduce symptoms? It's an antibiotic, not an anti-inflamatory.
Sandy 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.
Sandy 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.
Casey 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!
Connie 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.
Connie Does anyone know if it is possible to have Sjogren's even though the lab tests are negative for it?
Patsy Keeney Yes, it is possible. My lab tests were negative and I had a salivary gland biopsy which is the only thing that will confirm that you don't have it. Mine was positive.
Jenny wyman 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...
Gwennie 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!
Sandy 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.
Casey 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
Sharon The new formula Biotene made my mouth burn. Bring back the old.
Gwennie 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.
Gwennie 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.
Connie Sandy, thank you very much for responding about negative labs and Sjogren's - I've been wondering for quite some time now.
Sandy 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.
Sandy 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.
Casey 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!!
Luanna Carter 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!
Kate New 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?
Kate New 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?
Sandy 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 flareup, 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.
Ruth Garcia 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.
Rosanna J Ruth, I understand how you feel, I had been having shortness of breath and weakness on exertion, found out in may that it was heart, had a heart stint placed,had to go on a strick diet and loss 18 pounds, started feeling better, and then I was having problems with my flux and the doctor changed my med to dexilant, stronger than what I had been taking. Then I was feeling better, till I started having weakness and shortness of breath On exertion, found out it was my lungs, waiting for my test resuts, usually feeling weak for two weeks and then feeling better for one week. I have been diagnosed with secondary sjogrens since 2002, I believe I have had it since 1964 when the allergy doctor said I had a problem with my immune system, took shots for a lot of years, I also have osteoarthritis, and had to get dentures four years ago. I also have alot of bouts with cellultis, prescribed Bactrim ceam,it works great. Cellulitis is a very painful infection,and can spread fast. I am taking evoxac for dry mouth and eyes, very expensive,another one is salagen, both prescriptions,my doctor put me on a. Prevention meds called quinacrine, to slow down sojrens,it can block bone marrow, and have blood tests to monitor it.
Char 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.
Catherine 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.
Tanya Hello Catherine I realize your comment is a bit old but I was wondering if you had found a clinic to go to? I am in Brantford. I am starting to suspect I have Sjogren's, I'm trying to get an app't to see my doc but he's always booked up! I hope you found someone good!
Rosanna I have alot of my ankles beING weakand swollen, I also have enlarged spleen and raynoids.
Suze 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.
Lisa Reed Can you tell me the brand of Vitamin B you use? And where did you find liquid stinging nettle? Thank you so much = o )
Connie I have inflammation of my lungs and the doctor wants to put me on prednisone. Anyone treat inflammation of the lungs with something else? Thanks and may the Lord bless you. Connie
Julie My lung doctor tried everything....my shortness of breath did not get better and I took hydrocodene to suppress my cough! I read about NAC an OTC and it has changed my life! I take 600 mg twice a day and after several weeks I stopped coughing, my breathing is better and most of my fatigue had subsided. It's been 18 months now and everyone around me is shocked how well I am doing. I still have to use prednisone during flare...but my lungs are so much better.
Richard Hernandez Hi Julie, Can you tell me what NAC is in your comment? My wife was diagnosed with Sjogrens last year and she is been experiencing the shortness of breath and fatigue....thank you
Suze CONNIE -- see my posy above yours. Saved me from a nursing home and kept me off meds.
Connie Suze, how much stinging nettle and what kind? Do you have lung problems? I also have BP problems and can't take the meds. Tha nks
Connie Anyone have sjogren's and high blood pressure? I react to all the meds and need something ASAP. Thanks, Connie
Suze Connie -- I use the liquid Stinging Nettle Leaf (about an eyedropper full in a bit of juice) as well as the Stinging Nettle ROOT capsules, about 2 or 3 a day. You can get them (not too expensive) from Swanson's or Vitacost. Yes I have lung problems that the Stinging Nettle really helps. Stinging Nettle seems to roll back all my Sjogrens symptoms. Not completely, but quite a bit. It was used centuries ago for many things, including "dry disease" -- sound familiar? http://www.herballegacy.com/Vance_Medicinal.html I also drink Braggs Apple Cider Vinegar with some juice and water -- very good for you, too!
Catherine Wight I have hypertension treated with candisartan and atenol the former with a mild diuretic. Works well for the bp but doesn't touch the breathing problems. The breathing problems seem to be stemming from the upper airways so may be flabby, scarred larynx. I also pulled a breathing tube out of my throat, inflated, during a period of confusion post meningitis induced coma. Dr. said I really damaged my vocal cords.
Jay Thompson I have been diagnosed with sjorgrens 5 years ago. I also have fibromyalgia, spinal stenosis, hyperparathyroidism, dystonias, trouble breathing, severe chronic back pain, numbness tingling in extremities, chronic cough, extreme tiredness, horrible teeth. Headaches ect. Ect. If I could I would pull out my own spine, just to relieve the pain. Shortness of breath and chronic cough continues to worsen. My Dr.s do not seem to understand sjorgrens at all, I'm so tired of them stating they understand the dry eyes and mouth, and that's it. What about all the other organs that require liqiud like the spine,lungs, stomach, kidneys ect. I was scheduled for a spinal surgery to replace 1 through 7 of vertebra in neck, but after Dr. saw my dystonia he refused to due the surgery for risk of me breaking the pieces in my neck.
Charlie Barry Cherly, Have you had any problems with the Cellcept...such as melanoma...or any other forms of cancer? My doctor gave me the option of using this, but the cancer side effect scared me away.....I know two people on cellcept. One keeps getting melanoma..the other a brain tumor. Both of their doctors told them it was caused by the drug.....
Cheryl Charlie - I haven't had any problems with the Cellcept. I've been on it for over 3 years, and the problems I've had since then are not related to the meds, and/or have more to do with the lung disease (most recently pulmonary embolism). Every drug has side effects, and none are completely safe. It's hard, but you have weigh if the benefit of the drug outweighs the risk.
Sandra I was diagnosed with SS 3 years ago but have had symptoms for much longer. Now I know why I have breathing problems. My GP doesn't know anything about Sjogren's . All my symptoms have worsened over the last month. Does stress make it worse? I'm so thankful to have found this site. God is my source of strength and my dear husband who takes care of me.
Patty Do you need a positive Rheumatoid Factor to be diagnosed with Sjogrens?
Roberta Hello all, I was recently dx with Sjogrens in 9/2015. I have had this horrible shortness of breath since about 2009. I am scheduled to see a Sjogren's specialist at Penn in 9/2016 (soonest apt). The rheumatologist and pulmonologist I have already seen told me shortness of breath is not a symptom of Sjogrens but I see it listed everywhere and also above. Do you guys have any meds or other solutions (diets, etc.) that can help alleviate this horrible shortness of breath I am having? I am usually very active but I have been couch ridden for weeks on end at times since 2009. PS- I love reading your comments. It makes me feel not alone.
Cheryl Smith Roberta - it is rare, but Sjogren's can affect the lungs and cause interstitial lung disease (ILD) and scarring of the lung. I found a pulmonologist at the U of MN who specializes in autoimmune ILD - that's what you want to look for in a specialist. They will want to rule out everything else first (if they can), but like my ILD, it could be the Sjogren's. Good luck to you.
Doris I've been diagnosed with SS since July, but I've had some symptoms for years. The shortness of breath is what finally made me go in. The Cardiologist said my heart is fine. The Pulmonary Dr said I have scarring on the lower part of my lungs and he referred me to a Rheumatology Dr that's when I was diagnosed with SS. I hardly ever have dryness, my nose is ALWAYS wet to the point I have to dab it with tissue. I just started taking cell cept and kinda concerned with some of the side effects. I have the Raynauds too and I've tested positive for RA. I can deal with everything except the shortness of breath. I'm out of breath when I take a shower that I have to wait to dry off. Thank God my husband understands and has taken over ALL the house work since I can't do anything without stopping every five minutes.
Cheryl Doris, Did your pulmonologist do breathing tests and a walk test? Did they recommend you go on oxygen? Your symptoms sound very much like mine - basically shortness of breath with any activity. Enough oxygen can't pass into the blood, so your organs starve for oxygen, and being on oxygen can help with this. It can be a nuisance, but prevents further damage/issues.
Doris Yes I took the breathing test and the walk test. My oxygen levels are always 98 & 99. I'm going to ask about breathing treatments at my next appointment. I can't take a deep breath and that is causing me to be more concerned, but my CT scan and MRI show my lungs are clear and no masses just scarring of the lower lungs.
Sandra Macumber I was diagnosed with Sjogren's about 2 yrs ago but I have had symptoms for many yrs. This year I have developed shortness of breath with any exertion. It seems that autoimmune diseases like to travel in groups. I have four, all causing numerous problems. Pain and chronic fatigue being the worst, but the shortness of breath is very debilitating as well. I also have spinal stenosis, scoliosis and severe disc degeneration. I look absolutely fine on the outside making it difficult for many people who see me once in a blue moon to believe there is anything wrong with me. If only they could see me when I am totally bed-ridden for days in a row after preparing for their visit and entertaining them. I have to remain in a semi-reclined position most of the day because of my spine . Thank God for my 'electric chair' which I found on kijiji for $75.00. I to am very dependent on my husband and I thank God everyday for his loving care. God bless you all on your journey with autoimmune diseases. Just take it one day at a time.
Kathy Daughtrey Thank God I found you before I lost my mind! Will pray for you s all
Julie 2 Thanks to all. I was diagnosed with sensory integration disorder as well & yes stress can cause s.s. Diagnosed with c.f.s. (20's) & s.s. (Age 6) I'm now 32. Any questions? Vitamin C works!
Susan I was told by 1 doctor who is an opthamologist that I have SS and have every symptom. My new rheumy ordered a lip/salvary gland biopsy where the ENT dug for an hour (which really hurt) to remove 5 salavary glands. He said there was no sign of inflamation or SS. I have been on meds to increase salava. Does you or anyone else out there know if this was the correct biopsy procedure or if a negative result can be false?
Susan Massey Does anyone have a cough that pops up when stress comes along? I immediately get a dry mouth, sweat pours off of me and even my hair gets wet from the sweat. I feel like I am going to die because I cannot catch my breath. I also have RA, Ulcerative Colitis, Degenerated Disc and had 2 back surgeries in the last 1 1/2 years. Not only did my reumotogist take me off my remecade and methotrexite he told me he does not know what to do for me. He suggested I go to Mayo but knows I cannot go because of insurance that will not cover it until Jan 1. Any comments or sggestions will be truly appreciared.
Julie2 Yes, stress will worsen coughing. It is very important to get stress under control. Stress will cause flare ups in any disease.
Jennifer Rogers My mom has SS, she is getting oxygen this week, her avg SaO2 is 79%. There are pulmonary specialist for sjorgrens patients but the one in TN doesn't take her insurance.
Maibritt Brodersen Hi Julie, can I ask you what NAC and OTC stands for? Is it a specific type of medicine?
Kathy NAC stands for N-Acetylcysteine, and OTC is over the counter. You can buy this on line or health food stores. NAC is an antioxidant. Read about it on the web. I'm using it, due to a lung condition. It is supposed to reduce mucus production.
Susan Have you had any side effects from the NAC? I just ordered this with the hope it helps.
Kathy I've only been taking it for a week. I haven't had any side affects. I take one 600 mg capsule with a meal as suggested on the bottle.
Valerie I sought a diagnosis for 16 years because of chronic breathing problems. Finally my dentist was very concerned about my dry mouth and after doing research had a lip biopsy for SS. It was positive (all blood work was negative.). I found that the medications for my breathing problems- especially bronchodilators like albuterol, ipatropium bromide and foradil- made me worse. I have found a regime that works for me when I have a flare-up but educating my doctor had been a problem. I have to have predisilone (liquid prednisone) and robitussin till the inflammation recedes. I can't take the pills because I'm highly allergic to dairy and wheat. I would live to see patient flyers for the interaction between SS and bronchitis that I could take to my doctor. We have decided that I will go to my doctor Monday to try to communicate my needs. I have also found that making tea with fresh mint helps to relieve the effects of dryness.
Beth I have had Sjogren's Syndrome for over 20 years all the usual dry eyes,mouth,trachea,lungs, ect.. I just found out I have Restrictive Lung Disease and had a severe low Vitamin D level, I have been very sick waiting to see a Lung Specialist and get a CT scan To find the exact problem with the lungs...
Susan What symptoms did you have?
Kelly I have mctd with Ss secondary. On plaquenal and exovac. Salava is thick an hard to.swallow. Had tear ducts cauterized which has helped. Also on xyildra for dry eyes which has helped. I went to John Hopkins Ss clinic to confirm it was sjogrems. They did a MRI of my Salavia ducts which show damage. Salavia problems are annoying for I find myself making slurping noises which is annoying to others I am sure. I also have extreme fatigue. Tired of everyone saying I look great when I feel horrible. No one believes my problems and so hard to explain to anyone not familiar which is most everyone.
Marichu Hi Ruth, For years, i've been treated for dry eyes and mouth...in 2012, i've been diagnosed with Bronchiectasis and Non-Tuberculous Mycobacterium (NTM). All these years, SS was never considered until my breathing became so bad. Most recently, my tests came out negative for the traditional SS antibodies but positive for the 2 early biomarkers. My lungs do not show intertitial. I do not which of my shortness of breath is caused by the Bronchiectasis/NTM and which is caused by the SS, if at all.
Julian Julian from Eugene, Oregon. I was diagnosed of Chronic Obstructive Pulmonary Disease (COPD) in 2012 at the age of 63. I had been a heavy smoker, my symptoms started out with dry cough and shortness of breath, i ended up in the hospital, on a ventilator. I should have known it was coming, but like most smokers, thought it would never happen to me. My COPD got significantly worse and unbearable because of my difficulty catching breath. Last year, i started on a natural COPD Herbal therapy from NewLife Herbal Clinic, i read a lot of positive reviews from patients who used the treatment and i immediately started on it. I had great relief with this herbal treatment. I breath very much better now, no case of shortness of breath or chest tightness since treatment, my lungs condition is totally reversed. Visit NewLife Herbal Clinic website ww w. newlifeherbalclinic. com. This treatment is a miracle!!
Saundra I have had Lupus, Sjogrens for 25 yrs, Renal Tubular Acidosis (RTA) for 20. I have found avoiding processed food, dairy and gluten make all the difference regarding inflammation. Basically, with regard to food, if it didn't come out of the ground or have a mom, I don't eat it. What we put in really affects our bodies and while it may sound difficult, I prefer pain-free to eating the non-healthy stuff 90% of the time. (I am an ice cream junkie.) I have found a supplement called HydroEye to be extremely helpful with dry eye, and Natural Tears CVS brand to be the best overall for me. I am on 7 mg of prednisone and 600 plaquenil daily, as well as .06 colcrys 2xday. I try to walk 2 mi a day to keep the nerve pain in my legs and feet at bay, and to strengthen my bones since I cannot get below 7 mg prednisone daily. (For 25 years). It is a balancing act as you all know but attitude is everything and do your best to keep moving, it makes all the difference! Drink a lot of water too!
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