Sjogren's & Lungs History, Diagnosis & Issues (Lung, Lungs)

[maiestro]

I just wanted to bump this up a bit higher.

After speaking with a further two specialists (who have seen three of my CT scans) they believe that I have cystic lung disease associated with Sjogrens and have had this since at least 2004.  There is no further treatment for me at this time other than the existing plaquenil that I'm on (or that I'm supposed to be on, but which I keep forgetting).

No recommendations for a lung biopsy or anything like that, as it's still far too early and I have no symptoms aside from the cysts. 

[navydad]

Lots of calcified lymph nodes in both lungs,, attributed to histoplamosis,, apprently its common in my area,, but who knows,, no biopsys or anything like that

[quilt4fun]

female, age 62
Diagnosed with Sjogrens March 2010
diagnosed with lung problems  November 2009
nonsmoker
2009-Chest exray and cat scan showed "old scar tissue in left lung". was told it was probably from pneumonia at an earlier age(never had as far as I know)
Also went through sleep study Dec 2009 . First diagnosed with sleep apnea, but 8 months later, it was reversed.
Have breathing problems when around certain flowers and perfumes.  Use ProAir for emergencies.
Get out of breath easily.  Feels like I can't get all the air out when exhaling.

[irish]

I was diagnosed with asthma when I was in my early 40's and had started at age 4 with allergies that proceeded to get worse and ended up with really, really bad hay fever.

I was treated as as asthmatic all those years and would go into the doc with upper respiratory infections feeling really weak and ill and short of breath. I would tell the docs that I could feel the mucus in my bronchial tubes when I breathed. They would listen again and tell me they could not hear anything.

Well, we all know the end to this story---turns out I had the sjogrens for many years and I am positive that some of my issues were asthma most of the issues were the sjogrens and the myasthenia gravis.

Anytime a person is suffering with a possibly sjogrens diagnosis they would do well to see pulmonary and immunology. Sjogrens has so many issues that can be confused with allergic reactions and the immunologist should be the guy who can sort all of this out. Most of them should be able to sort out what blood work to do and what it means. If their practice is more allergy oriented then they should be able to point you in the direction of an immunologist who is more interested in the autoimmune aspect. This wide range of illness is all very related in one way or another.

Also, any time you have autoimmune issues one becomes a higher risk for cancer because of the tendency for the immune system to get screwed up. This means that our B and T cells can be affected causing our body the inability to fight off infections. When we have low B and T cells our body can also low the ability to fight off the invader cancer cells. It sure does get very complicated. Just a little info that I have learned along the way. Good luck to all. Irish

[Meeufette]

 CURRENT AGE: 53
SEX: female
SMOKER/NON-SMOKER
AGE OF SJOGREN'S DIAGNOSIS: 47
AGE WHEN LUNG ISSUES STARTED: 30's
HAVE YOU HAD CT SCAN?  BRONCHIALOSCOPY?  BIOPSY? - ELABORATE ON RESULTS: CT scans show brnchial tubes inflamed. Several bouts of pneumonia, bronchitis, pleurisy and periocarditis. Had bronchospcopy in Oct 09 that showed inflammation relating to SS
DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED): asthma, SS inflammation
SYMPTOMS (LUNG SPECIFIC): Had chronic cough and shortage of breath; fatigue and back pain
TREATMENT / RESULTS (PLEASE ELABORATE): nebulizer treatment with albuterol; lots and lots of prednisone
DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Yes, I am unable to do any uphill walking; cannot tolerate cigarette smoke or environmental conditions. Limits my life considerably.
OTHER NOTES, ETC: I am now on 2,000 mg a day of CellCept to keep my immune system in control. I have kidney inflammation from SS as well. I also have muscle/joint pain and other immune issues.

[Billydude]

CURRENT AGE:   53

SEX: M

SMOKER/NON-SMOKER:  Non-smoker

AGE OF SJOGREN'S DIAGNOSIS:  50

AGE WHEN LUNG ISSUES STARTED:  Cronic Bronchitis since I was a child

HAVE YOU HAD CT SCAN?  BRONCHIALOSCOPY?  BIOPSY? - ELABORATE ON RESULTS:  X-ray and two PFT's

DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED):  Pulmatory Doctor said my lungs have become small and working only at 70 per cent and has scarring and believes it is due to Sjogrens.

SYMPTOMS (LUNG SPECIFIC):  Chrionic Bronchitis since a child.  I get a terrible virus twice a year and the last few times it becomes nearly critical.

TREATMENT / RESULTS (PLEASE ELABORATE):   Since it is in conjuntion with dry sinus where infection starts I must constantly use saline stray in the nose to keep sinus clear.

DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE:  Lung infections take months to clear up so it definately effects me during that period.

OTHER NOTES, ETC:   I know all the literature says that Sjogrens is not a terminal disease but I'm convinced that the lung involment will soon be the end of me when I get another bout of bronchitis.  I can't seem to get over it and last time needed oxygen to breath.   I got sick in early June and only now here in mid-september can I say I'm nearly over it.

[ggilmartin68]

CURRENT AGE: 42

SEX: F

SMOKER/NON-SMOKER: NON-SMOKER

AGE OF SJOGREN'S DIAGNOSIS: 35 (mom & grandmother both have it)

AGE WHEN LUNG ISSUES STARTED: teenager with asthma

HAVE YOU HAD CT SCAN?  BRONCHIALOSCOPY?  BIOPSY? - ELABORATE ON RESULTS: CT Scan, Xrays

DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED): Asthma, chronic bronchitis, small lymph nodes around lungs detected years ago and doc contemplated biospy, but 2nd opinion said no....having another CT scan tomorrow

SYMPTOMS (LUNG SPECIFIC): coughing uncontrollably for last 7 weeks and on max meds.  Pulmonologist can't decide if it is related to asthma or sjogrens since I'm on all the possible med that I can be on for asthma and it's not budging

TREATMENT / RESULTS (PLEASE ELABORATE): nebulizer-every 4 hours, advair 500/50 twice a day, singulair, evoxac-3 times a day, ventolin-every 4 hours,  astrovent-every 4 hours, prednisolone- last 5 weeks tapering down, Hydromet (codeine cough syrup-3 times a day), Augmentin, mucinex

DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: YES!  Avid tennis player and can't play...doc not even letting me 'walk' for exercise until asthma/sjogrens flare-up is under control.   Coughing all night and can't get a deep enough cough to clear my lungs. Spirometer test flopped today...every time I had to breather out...coughing attack started. Can't tell if this 7 week deal is a major asthma flare-up or underlying sjogrens issue...CT scan tomorrow at 7:00 am

OTHER NOTES, ETC:

Please make sure all information is accurate.

[bloodless]

Don't remember all the CT scans, MRIs and what not results. They said it was pluerisy. I was on oxygen 24 hours a day for a while. Really, really sucks and is really expensive. Now I'm just on oxygen at night. Still sucks and still expensive, but a definite improvement.

[lookingup]

I wanted to bump this back up, especially considering our sister Daisy.   I went to a funeral today for my friends dad who had pulmonary fibrosis.  That is a guaranteed killer.  Even though all the issues are bad here, make sure you remember, there are good doctors working hard to help.  My wife went from LAM to SJS w/ follicular bronchiolitis.  Yes, she has troubles, but we must consider the goods and chances for a cure also.  Be strong ladies. Rick

[buddybelle]

Non- smoker;  recent SJS diagnosis
bouts of pneumonia; reappearing nodular densities on right lung after xray and CT scan now diagnosed as mucous plugs; occasional shortness of breath and chest discomfort, recurrent dry cough

[June]

CURRENT AGE: 67
SEX: F
NON SMOKER
DIAGNOSED AGE: 67
LUNG ISSUES STARTED AGE: 4 AFTER WHOOPING COUGH
CTHR SCAN: NOTHING UNUSUAL : XRAYS: NORMAL WEAR AND TEAR FOR AGE
DIAGNOSED LUNG ISSUES: ASTHMA AT AGE 64
LUNG SYMPTOMS: SHORTNESS OF BREATH ALMOST CONSTANT, PRODUCTIVE COUGH THROUGHOUT THE DAY, REGULAR CHEST INFECTIONS (7 in last 6 months), EARLY MORNING DRY COUGH AND AT ODD TIMES THROUGHOUT THE DAY OFTEN COUGHING UNTIL I GAG, WHEEZING AND CRACKLING
TREATMENTS: SERETIDE 500mg X 2, VENTOLIN 250mg EVERY 4 HOURS, MONTELUKAST 500mg AT NIGHT, MOMETASONE NOSE SPRAY TWICE DAILY.  THE ONLY TIME I FEEL REALLY WELL IS WHEN I HAVE BEEN GIVEN PREDNILSONE, 7 TIMES IN LAST 6 MONTHS varied doses 2.5mg x 8 per day, 2.5mg x 6 per day and 2.5mg x 4 per day FELT MUCH BETTER EACH TIME.
DO YOUR LOUNG PROBLEMS AFFECT YOUR DAILY LIFE: YES, I FIND EVERYTHING I DO AN EFFORT AND OFTEN HAVE PROLONGED BOUTS OF COUGHING WHEN WALKING, AND OFTEN WAKE IN THE NIGHT TO COUGH.  I AM NO LONGER ABLE TO WALK FAR AND AM BECOMING LESS AND LESS MOBILE AND NEED MORE HELP IN THE HOUSE DESPITE LIVING IN A SMALL FLAT.   
OTHER NOTES: I AM UNSURE HOW MUCH OF MY LUNG PROBLEMS ARE DUE TO ASTHMA AND HOW MUCH DUE TO SJOGRENS.   

[bender62]

Primary Sjogrens
Fibromyalgia
positive ana
RF (was high)
sediment high(inflammation) esr
short of breath a lot
weak muscles, sore joints, shoulder/back pain, rib pain (well kinda inbetween my ribs..connective tissue?)  arthritis, sicca, dry mouth/eyes, itchy skin, headaches, insomnia,
EXTREME FATIGUE, MEMORY ISSUES, DEPRESSION, not feeling good/right, mood problems,
Spirometry -  TLC - 80%     My in and out capacity is good/well good enough, Doctor said I have very very MILD COPD...I have been a smoker for years.  I REALLY REALLY must not smoke.
Some patches on lungs (on one CT scan) they said could be emphesema LIKE patches...could not be specific in what they were...
My LUNG DIFFUSION CAPACITY is 69-74% which is what is concerning me the most. That test is for how well my lungs are working at transferring oxygen through to my capillaries into my blood... I have low oxygen.
waiting to see a pulmonist specialist
I have had Sjogrens now for sure more than 10 years, but diagnosed with it in my blood  seven years ago.
I just don't feel well period, and I am really not feeling myself and am fed up.

[irish]

kathy, As an ex-smoker who loved to smoke and quit about 12 years ago I plead with you to give it up. I know it is hard. My dear hubby was a smoker for 50+ years and had lungs cancer that was stage one and so far has not gotten worse---removal of segment was all he needed.

However, he has very severe COPD and it has been a wicked ride the past 4 years or so. If you quit now you most likely can improve your lung numbers and decrease the severity of your lung disease. It really is worth the effort. I will be thinking of you. Hang in there. Irish

[bender62]

Hi Irish, thank you very much.  You have been an angel in my day today...its been a very frustrating one..(I will copy post I just made on another..)..
Your words I read after I wrote this...I think I will close off tonight with your words held tight. Thank you..kathy



Re: Spirometry lung tests- Low diffusion lung capacity..and SS

? Reply #2 on: Today at 06:50:31 PM ?

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My Total Lung Capacity was 80% which is good (well mild mild copd).....the concern is the LOW DLOC which indicates the lungs are not functioning properly in the exchange of gases.  My blood not getting enough oxygen.  Depending on your sex, age, height and whatever factors depends on what DLOC reading is normal or abnormal.   My DLOC is abnormal.  I would question your doctor what is an abnormal reading for you based on the criteria and good luck. 
This Sjogrens is so frustrating when it comes to doctors. At this moment I am beside myself.  They want to send me  to a specialist 3 hours away, but that specialist won't take me unless I take ALL tests and more at the dentist and optometrist even though I have been diagnosed years ago and going to a rhematologist at the hospital for a few years. I felt that the rhemy at the hospital ....well I saw her every 6 months just to update her on any changes..  So far all they do is tests.  I have positive ANA, RF positive, ESR high, SS-LA , and now low DLOC.  Not to mention all the systematic stuff going on.  As well I have fibrmyalgia. However, my eyes and saliva is  bearable compared to the joint/muscle/skin issues,shortness of breath at times, extreme fatigue, muscle weakness, depression, headaches and whatever else my body decides to come up with on a daily basis and when It flares up badly.   Just came home from my cousins funeral who passed with cancer at 44 today.   I fell asleep when I got home emotionally exhausted and woke to a phone call from the nurse at my drs office telling me I have to start all these tests  over again to be able to see this specialist! It feels like i'm going back to square 1.....they won't take all the test result I've had over the years as they have progressed...My rhemy didn't do a schirmers test or anything to do with dentist because she said I didn't need it as my blood work was enough....This new place wants me to start everything over again??.. I feel like giving up and just suffering afterall, its an invalidating disease so maybe I should do what they do in the old days just suffer and don't go to doctors cause they don't do anything anyways for me..SO FRUSTRATED , TIRED and INVALIDATED and I dont' think the system cares anyways for me. Blah!

[Izabelle]

CURRENT AGE: 23

SEX: F

SMOKER/NON-SMOKER: non smoker

AGE OF SJOGREN'S DIAGNOSIS: 13

AGE WHEN LUNG ISSUES STARTED: 22

HAVE YOU HAD CT SCAN?  BRONCHIALOSCOPY?  BIOPSY? - ELABORATE ON RESULTS: X ray only - 'broncular wall thickening' - no other diagnosis.

DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED): 'broncular wall thickening'

SYMPTOMS (LUNG SPECIFIC): coughing, mucus, crackling and noises when breathing in, general feeling of dryness.

TREATMENT / RESULTS (PLEASE ELABORATE): Asmol inhaler.

DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Yes. Broken sleep because of coughing. Not being able to hold a conversation without spluttering. Can't go anywhere without tissues.

OTHER NOTES, ETC: Doctors tell me that there's nothing wrong because everything 'sounds normal'. I can feel it's not normal, especially after 8 months of having a cough.