Lungs and no care??

[DesignerS]

I have sjs with a lot of joint pain, fatigue, and lung involvement.
I had a nasty cough and shortness of breath for 2 months, coming on suddenly. A fever every day.

The plum did a CT scan. Results were abnormal. Many issues were found including interstitial lung disease.

So, the dr sent me home and said not to worry. I of course have done research, and it doesn't look
like you just ignore these issues. I am waiting to see a new Pulmo in 2 weeks.

Does it make sense that I am concerned?? I am coughing every single day like crazy and am beyond exhausted.

Designer

[Jasper]

I agree with you that Interstitial Lung Disease is definitely something to be concerned about.  Plus, you seem to be quite symptomatic, so I really do not understand how they can just send you home with no treatment.

From my research into Interstitial Lung Disease, there are treatments for it. As I am sure you have read, the treatments may include steroids and immune suppressants.

Hopefully your new pulmonologist is someone who is very educated about the current treatment and management of Sjogren's related  Interstitial Lung Disease. Often the specialist who are the most current concerning diagnosis and treatment are those affiliated with large university affiliated medical centers/teaching medical centers.

Hopefully your new pulmonologist will do a more thorough exam and treat you.

If it was me, I would also inform my Rheumatologist about the CT scan results and plan of action. Your Rheumatologist may wish to collaborate with the Pulmonologist on treatment options.

[irish]

You are not being a worrywart. People with Sjogrens have lung involvement but many doctors just don't get it. The Sjogrens affects the mucus secreting glands in the lungs and that can cause changes in the lungs.

Our mucus gets so thick that we cough just to try and move the thick mucus out of our airways. I have been going to a pulmonologist a couple of times a year to keep track of my lung function. Also, I had a disease that is in the TB family but is noncontagious. I had to be on 3 different drugs for one year to get rid of the infection. Sometimes people with autoimmune diseases are more prone to infections and really weird infections cause we can't fight off infections. The new pulmonary doc will probably order a sputum specimen.

Ask lots of questions of your new doc and do research. Also, do a search on this site for pulmonary issues, infections, medications, etc. and you should get some food info. Good luck. Irish
.

[Tharrell]

I'm the same as Irish, I too contracted a nontuberulosis mycobacterium infection, m.kansasii in my case. I'm on three heavy antibiotics for the next 18 month and hope I can kick it. I'm also on nebulizing treatments to open up my airways plus inhalers. I also have to use an acapella breathing devise to aid in lung clearance.
I would ask your pulmonologist to run a sputum sample just to make sure. Your doctor should at least have given you an inhaler to open up your airways.

[irish]

Tharrell, You sound like me. I had the mycobacterium kansasii also. I am also on a nebulizer and 3 inhalers plus I have been on The Vest which is chest percussion to help clear the lungs. My lungs are some better now and I think it is from the pulse steroid therapy that I have been on. (1000 mgm solumedrol once a month IV)

I have been lazy and skipping my vest and my nebulizer the past few weeks cause my lungs had felt better. However, they caught up with me and I have been getting more congested. I think I have been skipping my responsibility like a little kid.

A pulmonary nurse practitioner put me on the nebulizer and vest about 8 years ago because I had the Sjogrens, myasthenia gravis and the hypogammaglbulinemia and had a lot of infections. I have also had some wicked headaches lately and I can't do the vest when I have a bad headache. Shakes my brain too much and I get sick to my stomach. Good luck. Irish

[Tharrell]

How is the vest working out? I don't think the acapella is doing it's job since using it doesn't bring up the mucus I know is in there! Right now I'm using the high flow acapella since the low flow didn't do anything. My pulmo mentioned putting me on the vest if the acapella don't work.

[DesignerS]

Thank you to each one of my sjs friends😊 Your input is so helpful!
It has also given me the courage I need as I go see my new Pulmo in 2 weeks, and I thank
All of you for that. I hope for the best for all of us.

Designer

[irish]

Tharrel, I did Acapella off and on for a couple of years and it did sort of shake things up a bit. However, I never cough up anything from my lungs as my mucus is so thick. I use the Vest the same time I use the nebulizer. I also use albuterol in the nebulizer plus I add 2-3cc ampules of sterile water to the albuterol. This works so well.

It takes about 20 minutes for the neb and vest. The sterile water with the albuterol helps moisten the lungs and airways and helps move the mucus around better. When the albuterol expands the airways the moist mucus doesn't sit and plug things up as much. It really helps the lungs feel better. I did the vest and nebs 2 times a day and sometimes more for about 4 years and then was able to cut back to once a day except when I felt I needed an extra session.

It is crazy that I don't cough up mucus but I don't make much in lungs or other respiratory airways and mouth, sinuses. Sometimes I will hold the neb tubing so that I get a few breaths up into my sinuses for the moisture. I don't think the albuterol does much for the sinuses but the moisture feels so good. I think that the vest is great cause I would cry if it was taken from me. Off to do a treatment now.

By the way, I read when I do the treatment. When you first start out you feel like it will shake your brains out but you adjust. It takes time to learn to read at the same time but just don't hold your arms next to your body and the book doesn't shake as much. Good luck. Irish

[Kbanfield]

I apologize for the lengthy post. I have to do this in 2 postings:

First, let me say that I am very sorry you have received a diagnosis to such a heinous disease. I strongly recommend pulling up the Sjogrens Foundation's announcement of the openings of the Sjogrens Pulmonary Clinics throughout the country. Many ILD patients have posted on that particular page/announcement and you may find commonalities to your story. Also, the Mayo Clinic site provides a good summarization of the disease. Second, your Pulmonologist is not reacting with the urgency you deserve. You (Sjogrens patient) should be starting chemotherapy immediately to help slow down the progression, if it's not in end stage. Third, search for and schedule an appointment with an Interventional Pulmonologist. Never heard of one? Neither did I until mid-June. This is a niche specialty focusing on non-invasive treatments of easily stage lung cancer and lung disorders.  Mine is in a group specializing in heart/lung transplants (in case you struggle to locate one). Finally, if you don't already have one,  you can find quality oximeters on Amazon or in a local drug store. Track your oxygen levels.

Now, you're probably ready to call me a bossy-pants, but after I share what my mom, and subsequently myself, have been through this year, you'll understand that the information I'm sharing comes from a place where I have learned way too much about a topic I knew nothing about 10 months ago. I want no one to suffer the way my mom did.

On March 1st first, I underwent a Nissen Fundoplication (that's right Sjogrens patients, we DON'T have to live on PPI's and develop Pernicious Anemia - ok... that's a topic for another day). As I'm home recovering from this surgery, I received a call from my sister (with whom I was estranged with) that she has Lupus, and my mom (whom my sister and I were both estranged with) was in end stage "Idiopathic Pulmonary Fibrosis". I quotation mark it, because the incompetent doctors in New Jersey had a Sjogrens patient in front of them for months or even years and were completely oblivious.

I called my mom, and I arranged to drive up the following week. She was on 24 HR oxygen, and couldn't walk more than 10 weakly shuffling steps without collapsing into a chair, bending over with her head between her knees so that blood would circulate back to her head. It took at least 5 minutes to catch her breath.

It was during this visit that I pulled up the Sjogrens Foundation website. I showed her the list of symptoms (which she had about 1/3, I have about 1/2). Is my mom a doctor? Nope! But she was a retired hospital nurse focusing the majority of her career on the Telemetry unit. She's educated enough to realize that someone..... anyone but her youngest daughter, should have said the word Sjogrens to her before this. Not one of her doctors said a word, after a decade of battling corneal ulcers! As she's reading the ILD patient postings on the Sjogrens Pulmonary Clinic announcement, the look of despair overcame her demeanor. She had so many similar symptoms these patients had (for example, an enlarged spleen and non existent folate is one particular item she found).

A week later (3 weeks before she died) she asked her Pulmanologist about Sjogrens or Lupus causing the lung damage since her daughters have both (which would change the name of the diagnosis). His response: "oh yeah... I tested you for Sjogrens and Lupus, you were negative, so I entered you into the Esbreit drug trials."

I lost my s %!?!! A Pulmonologist has no business making that determination, especially because we all know, just a blood test is not enough. My mom agreed that had she known she needed to be cleared of both diseases, she would have insisted on a consult with a Rheumatologist. By this time, it was neither here nor there since she was wrongly placed on Esbreit; and had the expected outcome the pharmaceutical company warns Lupus/Sjogrens against: rapid deterioration of the patient's condition.

As I mentioned, she passed away 3 weeks later on April 25th.

As I started to do my 90 day post op check ins, I would relay the story to each of my doctors. When it was time to tell the Rheumatologist my family history updates, I just sobbed. She held my hand and said "I'm so sorry, you're mother suffered needlessly. The minute she found out she had ILD, she should have been placed on chemotherapy. They just handled it all wrong."

Given my new health risk (the child of a parent that dies from ILD is FIVE (yikes) times more likely to develop ILD), she immediately sent me to a Pulmonologist who agreed that I needed a baseline CT asap. The results showed that as of June 7th I have no fibrosis, but there is a lesion on the outside of my bronchial tube pushing into my right lung and esophagus; hence my introduction to the Interventional Pulmonologist mid-June and a 6 month follow up CT scheduled for 12/7.

[Kbanfield]

Part 2:

Catching ILD at an early stage is so critical for a patient, that each time I have an Upper Respiratory Infection and have problems breathing, I have to check in with my primary care,  often. Right now, I'm at the end of day 5 of bed rest while I'm being treated for, you guessed it, an URI. My next 48 HR checkin is tomorrow, and depending on how well I can/can't breath, I may be getting that CT scan sooner. Disclaimer: my Nurse Practioner at my Primary Care office has Lupus; hence the "kid glove" treatment anytime there's an issue with my breathing now.

Hopefully the details I have shared empowers you,  or anyone else reading this, to have a candid discussion. Know your options.... and at the very least, should your dr say "let's put you on a trial drug", just walk away. Really fast.

[ellieas]

Please don't let this go. I was dx'ed with SS in 2010 due to tests and other symptoms-no symptoms signs of lung disease. Two years ago,10/14, I began having shortness of breath.No cough or mucus. I had a PFT which my primary said was asthma. Switched primaries-insurance, who said, after seeing my O2 levels to see a pulmonologist and a sjogrens specialist right away. I had recently moved to a new area with an amazing teaching university. They began tests. While waiting for results, they put me on oxygen 24/7. I can't believe how much it helped and prednisone. Before all results came back, I went into total respiratory failure. They put me in medically induced coma for 9 days with all kinds of tubes, while trying to figure out what caused this. The Ct scan had shown some scarring but it took more tests to see everything--the diagnosis is interstitial lung disease from Sjogrens! I was in the hospital for 6 weeks. They saved my Life. It has been a hard 2 years but I am now on Imuran.Almost all weaned offPrednisone(which brought back osteoporosis and caused fractures in my back). BUT-I am still on oxygen 24/7 but now I am active in commuity activities, take fun  classes and go to pulm rehab 2 x week.Lung transplant not a good option.I have a new life but I am adapting and love my doctors. My family is amazing.
So, hopefully, you will be okay, but please keep looking for answers or for doctors that you trust!
Sending hugs,

btw-the disease has not become any worse in 2 years
Lesley