Hi there. In a great way for everyone to learn and express about their lung issues with Sjogren's, please respond to this post with your information. Feel free to share with your doctors also as it may help with these rare conditions.
NOTES: Please, Sjogren's patients only with lung issues. Please do not overexaggerate or put wrong information - good, accurate information will help everyone.
CURRENT AGE:
SEX:
SMOKER/NON-SMOKER:
AGE OF SJOGREN'S DIAGNOSIS:
AGE WHEN LUNG ISSUES STARTED:
HAVE YOU HAD CT SCAN? BRONCHIALOSCOPY? BIOPSY? - ELABORATE ON RESULTS:
DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED):
SYMPTOMS (LUNG SPECIFIC):
TREATMENT / RESULTS (PLEASE ELABORATE):
DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE:
OTHER NOTES, ETC:
Please make sure all information is accurate.
AGE: 32
SEX: F
SMOKER/NON-SMOKER: Non-Smoker
AGE OF SJOGREN'S DIAGNOSIS: Not Sure, SSA Counts high at 24 years old though
AGE WHEN LUNG ISSUES STARTED: 31 years old
HAVE YOU HAD CT SCAN? BRONCHIALOSCOPY? BIOPSY? - ELABORATE ON RESULTS: 3-5 mm nodules/cysts on lungs. CT Scan only.
DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED): Via CT Scan, originally thought to be LAM Disease through novice doctor, but through better doctor, diagnosis of Sjogren's with Follicular Bronchiolitis.
SYMPTOMS (LUNG SPECIFIC): Non-productive cough (10-40 per day), constant runny nose, occasional shortness of breath, other Sjogren's issues including stomach pain / heartburn, but no dry eyes or mouth
TREATMENT / RESULTS: Netty Pot (no help), Orange Peel Extract (for heartburn - no help), considering corticosteroids.
DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Sometimes, it depends on if I'm sick, or if I'm having a bad spell. However, my constant cough is annoying and my breathing can affect my talking (completing sentences).
OTHER NOTES, ETC: Look forward to seeing others results. Please elaborate on treatments and effects (both good and bad). Also, please elaborate if you are a smoker or non-smoker. Oddly enough, I can run 2-3 miles, but then cough all day and have trouble breathing sporatically.
Hi! Thanks for posting this! I sure hope more reply because I am curious how many do have their lungs affected.
CURRENT AGE: 35
SEX: Female
SMOKER/NON-SMOKER: Never smoked a day in my life!!
AGE OF SJOGREN'S DIAGNOSIS: 34
AGE WHEN LUNG ISSUES STARTED: Really bad 34 but had one bad bout around 29-30
HAVE YOU HAD CT SCAN? BRONCHIALOSCOPY? BIOPSY? - ELABORATE ON RESULTS: CT Scan-showed inflammation, air trapping, and something about the way the bronchioles looked?, PFT shows air trapping, low lung flows and volume. The bronchialoscopy is scheduled for July. I did do a provocation test that was stopped because of my heart and that's rescheduled too. No biopsy as of yet.
DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED): Some type of Bronchiolitis, can't remember the full name and xerotrachea. Waiting for the full report from my Dr's office so I can get the full name.
SYMPTOMS (LUNG SPECIFIC): Shortness of breath, feeling like when I breathe in, it's hitting a brick wall, but also feels that way when breathing out. Shallow breathing, burning and a since of stickiness in my lungs. Constant dry cough and chest pain.
TREATMENT / RESULTS (PLEASE ELABORATE): We have tried Advair and Flovent and Plaquenil(To try and treat Sjogren's in general) to no success. I am doing Hypertonic Saline Solution in a nebulizer that seems to help and will be starting cellcept this week as long as my kidneys are o.k. He says it's a moderate case that will keep progressing aggressively if it's not treated soon.
DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Absolutely! I only work out 3-4 days a week for about 30 minutes. However, I have problems with my heart too and if it's acting up as well, it's even less. I used to work out 6 days a week at least 2 hours. There are days my lungs are so bad I'm out of breath the minute I get up and it's very difficult to carry on anything for daily life. I can't shop by myself nor play with my kids on these days. I have yet to find a reason why these days are bad, there is no link I see as of yet. I have noticed fatigue can make my breathing worse.
OTHER NOTES, ETC:
I would be very curious of anyone gets back to normal everyday activity. I feel blessed to say I am seeing Dr. Meehan at National Jewish who is very knowledgeable in Sjogren's and it's affect on the lungs. I also see Dr. Kassan whose an amazing Rheumatologist but as of right now no meds are working. :(
Hi
My lungs aren't affected.
Take care - Scottie
Hi Sugarbuger -
Thanks for your post. Your bouts of breathlessness may be attributed to sickness that really gets everything going. Do you have a constant runny nose?
Check out these links also (medical journal articles discussing lung issues):
http://ukpmc.ac.uk/classic/picrender.cgi?artid=896354&blobtype=pdf
http://medind.nic.in/iae/t09/i2/iaet09i2p93.pdf
Look forward to more posts.
AGE: 53 Female, Definitely a Non-Smoker Diagnosed SJS: March 2009
Noticed spots on both lungs first Sept 09. CT done and then 2nd CT done in Feb 2010. Between times some spots went away, some got smaller & 2 more appeared.
Bronschoscopy done March 2009 = Results were no infection, no cancer and no fungi. Doesn't seem to know what it is but spots attributed by pulmonologist as Sjogrens related, systematic.
No symptoms though blood oxygen a bit low which I attribute to having a sit all day job and not exercising like I should. Pulmonologist suggested aerobotic exercise which I am doing 15-30 min per day and being retested in Sept 10.
Treatment & How it is Affecting Me: None except I gotta exercise and find a good exercise music tape. :P
Other: I do sinus flushes daily but I started that March 09. I don't understand WHY the pulmonologist can't figure out exactly WHAT it is. Can't help but feel he says it is SJS related as he doesn't know what else to call it. ???
Thanks for your reply. Is anyone experiencing chronich cough or runny nose (sinisitus) - 3 months or longer?
It will be good to have as many bios as possible for everyone to understand these rare combinations.
Quote from: lookingup on June 08, 2010, 05:40:45 PM
CURRENT AGE: 42
SEX: F
SMOKER/NON-SMOKER: Non-smoker
AGE OF SJOGREN'S DIAGNOSIS: 40
AGE WHEN LUNG ISSUES STARTED: ?? 25
HAVE YOU HAD CT SCAN? BRONCHIALOSCOPY? BIOPSY? - ELABORATE ON RESULTS: Chest X-Rays and CT Scan
DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED): Bouts of bronchitis, two cases of pneumonia
SYMPTOMS (LUNG SPECIFIC): Chronic bronchitis-- I get this about twice a year, several bouts of pneumonia, difficulty breathing, recently had surgery and had really low oxygen rates, the hospital could not believe that I was not a smoker or didn't have asthma of some kind; I'm not sure how much this relates to the Sjogren's as I've just been chronically sick for a long time
TREATMENT / RESULTS (PLEASE ELABORATE): was on a daily nebulizer for about six months; Flonase, steroids, antibiotics (I'm a little fuzzy on this because it's been a year since I've taken any treatments for a lung issue and to be honest without checking my medical records, I can't provide more). Temporary relief. I use a humidifier at night to help breathing.
DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Yes, especially during the winter when I am more prone to bronchitis and infections.
OTHER NOTES, ETC: Like I noted, I am not sure how much of this corresponds to the Sjogren's.
NOTES: Please, Sjogren's patients only with lung issues. Please do not overexaggerate or put wrong information - good, accurate information will help everyone.
CURRENT AGE: 46
SEX: F
SMOKER/NON-SMOKER: Non
AGE OF SJOGREN'S DIAGNOSIS: A few weeks ago.
AGE WHEN LUNG ISSUES STARTED: 24.
HAVE YOU HAD CT SCAN? BRONCHIALOSCOPY? BIOPSY? - ELABORATE ON RESULTS: Bronchoscopy. xrays, CT, no biopsy.
DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED): Allergic Asthma, bullous lesion right lung.
SYMPTOMS (LUNG SPECIFIC): Coughing, choking, asthma attacks. shortness of breath.
TREATMENT / RESULTS (PLEASE ELABORATE): Better since changing my diet and being very careful about exposure to environmental allergens and chemical smells and fragrances.
DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Most definitely.
OTHER NOTES, ETC: OK, whole ugly story: Major problems since I was 24 when I had viral pneumonia and was left untreated because I had no insurance. Over a year later my cough had not cleared, and I finally went to another doctor who ordered x-rays, and then a CT scan when he saw a spot on my right upper lobe. His conclusion was that it was scarring. With some prednisone I cleared up in time. When I got pneumonia was when I started choking on food all the time. I've always had a habit of drinking with food because I would choke, but not as badly as during and after the pneumonia. I have had continuing asthma issues since then that have gradually worsened with time. The doctors feel it is allergy based asthma. I notice a definite connection to whether or not I'm dehydrated, but you can only drink so much water! Last year I insisted to my GP that I needed to see a pulmonologist, as I was on a lot of meds and my coughing was still totally out of control. I woke up nightly with my mouth dry and choking, and coughing. I was already on Symbicort, Pulmicort, albuterol as needed, nasacort, astelin, and Zyrtec. I also was on prednisone. Max dosages twice a day on the Symbicort and Pulmicort. The GP xrayed my lungs and tada, another 'thing'. I was scheduled for 2 CTs and both radiologists felt that it was a bullous lesion, probably not cancerous. A bronchoscopy was scheduled but the doctor could not reach the lesion. A scan 6 months later showed no growth. I need to make another for followup to check growth. I have recently changed my diet to exclude gluten and some other foods that blood tests showed me as sensitive to, and have had very good results and have been able to cut back my meds.
CURRENT AGE: 29
SEX: F
SMOKER/NON-SMOKER: Non-smoker
AGE OF SJOGREN'S DIAGNOSIS: 29
AGE WHEN LUNG ISSUES STARTED: 29
HAVE YOU HAD CT SCAN? BRONCHIALOSCOPY? BIOPSY? - ELABORATE ON RESULTS: CT. A number of thin walled cysts (2-8mm) spread throughout my lungs.
DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED): LAM. Three different doctors (2 pulmonary and 1 rheumy) all believe cysts are due to LAM, not Sjogrens. However, they also say that it is far too early to tell, and can't prove anything until I get worse. A lung biopsy is not recommended (or wanted) at this stage.
SYMPTOMS (LUNG SPECIFIC): Nil. No symptoms for lungs at all. Sjogrens symptoms are dry eyes (bad to severe) and glands around mouth/throat are symptomatic, some mild arthritis which doesn't cause problems.
TREATMENT / RESULTS (PLEASE ELABORATE): No treatment for lungs. Nothing can be done until I start getting worse. On plaquenil for Sjogrens.
DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: No.
OTHER NOTES, ETC: Not yet.
Just out of curiosity---I am wondering if you are wanting this info for your own use or if you are doing a research study for a class. Possibly work for specialists doing sjogrens research, etc? :D
So many of the people with sjogrens have some form of lung issues and fibrosis is one of the more common diagnoses. Sjogrens can affect the small blood vessels so possible that lungs can be affected this matter. Probably more knowledge will be gained as time goes on. The interesting thing is that people will have another autoimmune disease that can affect the lungs and it is hard to sort these symptoms and diseases out. Irish ;D
CURRENT AGE: 53
SEX: female
SMOKER/NON-SMOKER:soked between ages of 11-25. Non-smoker 27 years
AGE OF SJOGREN'S DIAGNOSIS: 50
AGE WHEN LUNG ISSUES STARTED: 25
HAVE YOU HAD CT SCAN? BRONCHIALOSCOPY? BIOPSY? - ELABORATE ON RESULTS: CT scan showed bronchiectasis in mid and lower lobes of right lung. recently, there have been crackles in left lung, but no infections.
DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED): Bronchiectasis and asthma (allergic and exercise induced)
SYMPTOMS (LUNG SPECIFIC): Had chronic cough and shortage of breath until right meds were found
TREATMENT / RESULTS (PLEASE ELABORATE): salmeterol, salbutamol, tiotropium bromide, nasonex,loratadine.
DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Yes, generally need salbutamol if I'm to do any uphill walking, meet with cigarette smoke or after cold viruses. Limits my exercise.
OTHER NOTES, ETC:
Please make sure all information is accurate.
Like Irish, I would be interested to learn the reasons for this survey.
Kathyx
My name is Rick. I am actually just trying to get more information on my wife's condition (32 YO). She was originally diagnosed with LAM, and her doctors are having trouble getting a 100% diagnosis, so I was just trying to get information for her and everyone else. As bad as Sjogren's is, trying getting one for LAM. We are now fairly positive she has Sjogren's with Follicular Bronchiolitis. Forums like this help everyone with rare conditions communicate and learn.
Maiestro - first read this - http://insciences.org/article.php?article_id=9251
You need to contact Dr. McCormack at the University of Cincinnati - I was told the same as you by my doctors. He has just developed a way to separate LAM from other diseases without the need for a lung biopsy and it just got accepted. Tell your doctors too. My wife was one of his first patients after his study was published. He is VERY good and VERY helpful. Only contact him if you have a LAM diagnosis though, because he's not an autoimmune lung specialist, but can separate the two. Personally, I would ask your doctor to work with him and have him send you the VEGF-D kit, so you can get tested and have more info. You can also contact me - I'm NOT a doctor, but my wife has been going through the same as you and being a web person, I've tried to learn as much as possible. I don't know how to do it, but you can message me through the boards. Too be honest, if you get the same diagnosis as my wife, we've been looking for other people to talk with and compare notes with.
Quote from: lookingup on June 08, 2010, 05:40:45 PM
Hi there. In a great way for everyone to learn and express about their lung issues with Sjogren's, please respond to this post with your information. Feel free to share with your doctors also as it may help with these rare conditions.
NOTES: Please, Sjogren's patients only with lung issues. Please do not overexaggerate or put wrong information - good, accurate information will help everyone.
CURRENT AGE: 73
SEX: Female
SMOKER/NON-SMOKER: non-smoker
AGE OF SJOGREN'S DIAGNOSIS: Probable connective tissue disorder noted 53- muscle and joint pain, bloodwork showed high ANAs. I did not follow up on this
AGE WHEN LUNG ISSUES STARTED: 63 or so
HAVE YOU HAD CT SCAN? BRONCHIALOSCOPY? BIOPSY? - ELABORATE ON RESULTS: All three. I had a Vats procedure at age 66 which showed follicular bronchiolitis caused by a connective tissue disorder. For various reasons the pathology slides were read by 4 different pathologists with the same conclusion. I have had several bonchoscopies and numerous CT scans following the original diagnosis.
DIAGNOSED LUNG ISSUES (ONLY IF CONFIRMED):follicular bronchiolitis, bronchioectasis
SYMPTOMS (LUNG SPECIFIC): shortness of breath- PFTs show moderate loss of lung function; cough, sometimes dry and sometimes mucous producing (due to bronchioectasis); lack of stamina, and exteme fatigue. These two latter symptoms are not solely related to lung function
TREATMENT / RESULTS (PLEASE ELABORATE): immediately following VATS diagnosis- one and a half years of Prednisone- six weeks on dosage of 40mg, the rest of the time spent tapering. I believe this halted the immflamatory process. One year or so on antibiotic per Mayo Clinic article. Cellcept for several years. Currently using Zyrtec, Nasonex, Musinex, Symbicort, Albuterol inhaler as needed to prevent allergy symptoms leading to bronchitis and pneumonia. Also have a prescription for a strong antibiotic and another for a steroid to take if I feel I may becoming sick. Even with treatment I have had two severe pneumonias, one requiring hospitilization; pseudomomas infection, bronchitis. My pulmonologist feels my lungs are stabilized and after one more CT scan next year I will be followed by XRays.
DO YOUR LUNG PROBLEMS AFFECT DAILY LIFE: Yes. The shortness of breath prevents walking much. I'm quite inactive. The coughing is debilitating. My main problem is extreme fatigue.
OTHER NOTES, ETC: (1) Although I positively have a connective tissue disorder my diagnosis of Sjogren's is not definitive. When I first saw a rheumatologist the blood work was most consistent with Sjogren's. I did not have dryness then nor do I now. For awhile I saw a rheumatologist at Duke University who used the diagnosis of undifferentiated connective tissue disorder. (2) I have had breast lymphoma twice- first in 1989 at age 52 and next in 2004 at age 67. This is an extremely rare diagnosis and to have had in twice in two different breasts is undocumented anywhere as far as I know. Again my pathology slides were read by experts. I mention the lymphoma as it is sometimes seen with Sjogren's. As you probably know by now follicular bronchiolitis is also very rare and little understood. I am so sorry you wife is experiencing this at such a young age. I would urge her to be vigilant with mammograms as both my malignancies were detected this way. Also to seek VERY good care for her lung problems. Because of the rarity of the follicular bronchiolitis it would be to her advantage to be seen as a good teaching hospital. Despite these challenging problems my life has been full and happy. We can hope that new and better treatments will be coming along to help your wife and othes. Please feel free to pm me if you have any further questions.
Please make sure all information is accurate.
Female diagnosed at age 44 with asthma. No other lung issues. Non-smoker.
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.
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
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.
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 ;D
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.
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.
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.
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.
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
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
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.
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.
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
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! :'(
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.
Age: 53
Female
Non-Smoker
Lung issues began as a young child
Many tests through the years: Xrays: CT Scans; Bronchoscope
Diagnosis: Bronchiectastis - 2/3 of R. Lung removed at age 14 y/o
Current Issues include: Pleurisy; Rib/Back Pain; Shortness of Breath upon Exertion; Dry Cough; Extreme Fatigue; nodule in right lung
Current Meds include: Steroid Pack; Antibiotics; Inhaler for Dry Cough
Yes, current pulmonary issues are affecting my life in a negative way
SjoDry