Hi, I am new to the forum.i have an undifferentiat autoimmune disease as well as fibromyalgia. I have recently developed symptoms of Sjögren’s as I have severe dry eye and dry mouth. I am currently on restasis for my eyes and was on Evoxac for my mouth but it was causing rapid heart rate so I had to stop. I have been experiencing shortness of breath for about a month now. Has anyone experienced this as a Sjögren’s symptom?
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You can search in 'All Discussions' for any topics you're interested in- sometimes the old discussions can be useful sources of info, although it's nice to get support from newer members too. Lung problems can be down to SS, partly because of the dryness, some members have had similar problems. I found this, posted by Tez_20 , back in 2013 (here's the link: http://forum.sjogrenssyndromesupport.org/forum/topics/organ-involvement-with-sjogren-s-syndrome ) :
Lungs. Breathing problems may develop (you may feel like you can’t get enough air) Infiltration of the lung tissues makes the lungs stiffer and this reduces lung volume and makes it harder to take a full breath of air. Cough and tendency to infections may be noticed from dryness of the mucous membranes lining the tubes to the lungs.
Heart. Pericarditis (Inflammation of the sac which holds the heart) This complication is more commonly found in people who have Rheumatoid Arthritis, Systemic Sclerosis (Scleroderma) or Systemic Lupus Erythematosis (S.L.E.) often called Lupus. Many people with these conditions also have Sjogrens Syndrome. Pericarditis causes shortness of breath and chest pain which is often worse when changing position such as leaning forward or with when taking a deep breath. It is diagnosed with an ECG and often an echocardiogram to look for fluid accumulation in the space between the heart and the pericardial sac. If fluid develops this is called a pericardial effusion . This is a very serious complication as the heart is squeezed and unable to fill and pump blood properly causing fluid to build up in the lungs (pulmonary oedema). Extreme shortness of breath and fatigue results. This condition is likely to become fatal if not diagnosed and treated promptly and appropriately.
I hope that this isn't too scary... are you seeing a pulmonologist? If not, then it might be an idea to get a referral. I forgot to mention when you joined too, but have you seen the Ben's Friends Fibro site too- they're very helpful.
Jules, thank you so much for the info. My rheumatologist said if I am still short of breath tomorrow then she is sending me to a pulminologist. I will be sure to push for it.
Welcome Nicole
I had shortness of breath with Sjogren's and was fortunately sent to a pulminologist immediately. One can get several forms of "interstial lung disease" from Sjogren's. My diagnosis was bronchiectasis secondary to Sjorgren's. Also, Tez was great for surfing the web and findiing great information.
Hope all gets under control,
You got to hold on.
Thank you for the support. I am going to a pulmonologist tomorrow.
Hello eveyone,
Im new to this forum. I am a newly diagnosed sjogrens patient. It was shortness of breath that lead to my diagnosis. ive been undergoing numerous testing over that last five years and no one was able to figure out what was wrong with me until I could not breathe. After multiple specialist a ENT finally discovered I had subglotic stenosis. That is a scarred narrowing I
Of the trachea. There is only a few things that cause it and autoimmune happens to be one. I have had to have several surgeries and they did a biopsy for wegeners which came back inconclusive. After some extensive blood work I showed the antibodies for sjogrens. This all lead to my diagnosis. Its a scary thing , not to be able to breathe but after all of this I have so many answers. Not sure yet whether this a curse or blessing.
Thank you for the response. I saw a pulmonologist last week and was told my heart rate is too rapid to use an inhaler right now. So I go for an echocardiogram and pulmonary function test next week. I am using a humidifier. Thank you for all the information.
NEWS! I have bronchiectasis--like adult cystic fibrosis. Sjogren's caused it by drying out my lungs Plus I've had pneumonia for about two years.
I've been put on a relatively new antibiotic called "Kayston" that has a specialized nebulizer that delivers a "nano-spray." Get's between the cells. Prophylactic to prevent me from getting reinfected with pseudomonas.
NAC: N-acetyl-cystine. This stuff really loosens secretions in the lungs, really. You can get it by Rx or over the counter. Make sure you discuss it with your doctor either way. I threw away the M...c....n...x
Lastly, I have been using the HillRom occilating vest. I call it the jigulator.
These are sympomatic treatments. However, it makes my life more comfortable.
You got to hold on.
Sorry to hear that, but glad you have a diagnosis and some treatment. Hope that the antibiotic helps.
Welcome Nicole, Everytime I get sick I develop a cough/ asthma.
I didn’t realize my low…IGA,IGG,and IGM were causing this. My ENT prescribed Flovent HFA for days when I can’t catch my breath. I just started Evoxac as well, it’s making me a little sick to my stomach,but I’ll stick with it and see if it subsides. Do you notice any side effects?
My eye Dr thinks that saline will work for my dry eyes…instead of Restasis,but I was to tired and sitting in the waiting room for over an hour to arguing with him.
My sjogrens was found because of shortness of breath. It has gotten worse over the last 10 yrs. My rheumatologist and pulmonologist cannot find anything that helps. I do have an inhaler which only helps when my throat begins to feel like it’s closing and I start to lose my voice. It’s much worse in the heat when I golf. Several times I have to quit do to headaches, dizziness and breathing issues.
I do see several things I’ve read on here i will ask my doctors about.
Welcome @Shulick. Feel free to post an introduction in the new member check-in. I would love to hear more about you and what you’ve been struggling with.