Interstitial Lung Disease and Autoimmune Diseases

@narelled23 - yes, I was diagnosed with Antisynthatase-PL7, was discovered last July after encountering SOB. Treatment started with a large dose of Prednisone 60mg daily (I’ve tapered down to 15 mg) and then 2000mg of Mycophenolate daily. It’s been a long and at times scary journey. But, I’m happy to say my Pulmonary function tests and O2 Levels have improved a lot. Currently have objective data showing disease stability and improvement. Although there’s currently no cure I’m optimistic for the future!

@rbear
Thank you so much for that information. I am so glad you have stabilised/improved.

Apparently there are 200 different strains so I am hoping to find out more on 11 March at next specialist appointment.

Wishing you continued good health...and I am hopeful regarding the cell therapy research which is aimed at turning on lungs to repair.
🙏❤️

@rbear May I ask if yours is an auto immune ILD?

@narelled23
Hi and thank you for your reply. I have only an occasional dry cough and sometimes need to clear my throat. Your nebulizing info is helpful should I need it down the road.

Hopefully you’ll get some answers at your upcoming appointment! One thought as I had to grapple with the reality of using supplemental oxygen for any exertion. So I went from first signs of shortness of breath in Sept to needing to use O2 when diagnosed in Oct. I really did not want to have to do that! But I get quickly down to 88 or lower on pulse ox if I do even slow walks. So accepting that and using it makes a more active life possible. I am fortunate I was able to get one of the small portable devices in addition to the concentrator I have. The irony of lung disease after never smoking and living a healthy lifestyle can drive me nuts so I try not to go there. I’ll be curious what treatment you end up with as you get further evaluated.
Are you in Perth? I think I saw another post from someone from there in the autoimmune strings I follow. If so, I had the wonderful opportunity to spend a few days working there during a business trip I took to AUS, probably around 1990. I fell in love with the stunning beaches and loved watching the school kids having surfing lessons on my morning walks.
Take care!

@loriach
Thank you for your reply. I am glad you seem to have stabilised on O2. My oximeter reading at night has occasionally been low as 88...but generally it is ok.

May I ask if when feeling SOB do/did you feel a band around under your breast area. I am not sure if it is the anxiety causing that or lung damage!!

Yes, Perth is a magic place to live certainly...I came here for a 1 year working holiday in 1973 and despite not having any family here it seems I can't move back over East...the quality of life is so much better here.

I wish you the best for your lung health.
Warmly,
Narelle

@narelled23 yes, I’m an open book and you can ask me anything!:) I’ve been right where you are and I know how scary it is while you’re waiting to find out the underlying cause of your ILD. You can’t control what your body is doing to you but you can control what you think about! As it turns out my ILD is caused by my immune system attacking my lungs. It’s lung dominant but also have an overlapping dermamyositis myo marker with symptoms that manifest as what they call “Mechanics hands”. The jury is still out how much of the scaring in my lungs will be permanent. But after 6mos of treatment and 3-4 6min walk tests and 4 PFT’s my pulmonologist is continuing to see
A trend towards disease improvement and control. With no signs of scarring progression. For a couple months I had to go on oxygen concentration machines while we figured out the diagnoses and treatment plan. But I haven’t used them since last September due to the improvement and stability. I’m fortunate in that the PL7 autoimmune variant responds well to broad based immune suppression medication. I am keeping in eye on CarT and IL2 immune regulating therapies.

@rbear Thank you so much for your reply. It is somewhat comforting to know that I am not alone...and to communicate with someone who understands. It seems impossible for anyone without some experience of these diseases to have an understanding.

I have had a chronic cough for 25 years, invesitgations confirmed asthma after some years, and then Bronchiecestasis about 10 or 12 years ago, reflux and the zillion other aging issues. I am 75 shortly and have been pretty active and fit and moving at a pace most of my life...so to have another lung condition added is hard to take.

However SOB is something I have experienced on and off - remember feeling a band around my chest when I was 18 - Dr prescribed Valium, which my boyfriend threw in the bin. When over that side of the county recently I had the same feeling which was relieved by an antihistamine...so who knows what was causing that back then.

I have gone off the Symbicort and PPIs which were prescribed about 8 years ago and for the last 3 - 4 years have been nebulising hypertonic saline and doing airways clearance daily to reduce the increasing amounts of mucus and decrease the cough. I have over the last year or so been clearing up to 3 cups of mucus a day. It just seems to keep increasing! I always thought it was the Bronchiecestasis but the specialists feel either asthma, post nasal drip, reflux possibly. Symbicort didn't help the Bronc so why take it! I have been back on it the last 5 months because of the sudden and ongoing episodes of SOB.

I now have to do some serious addressing of reflux on top of eating early, lying on side etc. Had tried short bed wedges, but not comfortable, so going for a full length one.

May I ask where you live? Narelle

@rbear
Yes, I appreciate your comment about the mind. The last couple of weeks have been incredibly stressful, in lots of ways. And of course stress is no good for the immune system...in fact I think that is the trigger for what has happened. A naturopath told me 40 years ago I was headed for an auto immune disease because my endochrine system was exhausted.

Now that I have done some of the hard yards in getting the ball rolling for diagnosis, understanding a little, trying to find what I can do to help, and preparing for the worst...I have been trying to avoid the News(!), listening to Classic music, aiming for more meditation and attempting to keep the mind away from worst case scenario (my go to position!!) (cheeky grin)

I have mild ILD with Lupus and RA. I was diagnosed at National Jewish Hospital (NJH) in Denver, an excellent resource. Mayo Clinic is also an excellent resource for this. The response here from Sue is excellent. The tests for still needing oxygen is pulse oximetry (finger sensor), 6 minute walk test ( tests oxygen saturation levels during exercise) and I would recommend getting tested for sleep apnea ( causes low oxygen levels associated with breathing cessation during sleep). Sleep apnea is common in RA and can aggravate ILD and cause many other problems. It is treatable, usually with CPAP, and requires a sleep study for diagnosis or a nighttime pulse oximetry test (easy screening test for sleep apnea.)I hope this helps you and your wife.

@narelled23 I’m sorry you’ve been suffering from all of this for such a long time. I know how scary it can be. I found myself in difficult to control catastrophe loops. Seeing a therapist helped me. But I’m glad you’re digging in and making noise about it! I’m 43, I live in Minnesota. I used to be healthy and active(ran 5ks and lifted weights 2-4 times a week). One tip I will give you that helped me focus and get organized in my Dr appts . I used Chat GPT so that I can present my symptoms in a more organized and concise way and ask targeted questions (this is not “Dr google”btw). I came prepared with a printed out medical summary and timeline of symptoms. It was after I gave my Dr my print out that things got way more focused and urgent. Later I would upload my test results to chat gpt to get interpretations as things began to escalate. After several CT scans, PFT’s, 6 min walk, Bronchoscopy and the most extensive blood tests I’ve ever encountered that’s how I got my diagnoses. From what I understand I’m a pretty rare case but, my diagnosis really takes some digging and they need to know what they’re looking for. From the time I was told I had ILD to my diagnoses it took a good 4-6weeks. Which felt like an eternity at the time but understanding what others have endured that’s probably fairly quick. I was diagnosed at the University of Minnesota Fairview ILD clinic. Couldn’t be happier with the care I’ve gotten there. Although my symptoms have improved a lot I still have this nervous’s that I could flare and regress. I follow my Dr orders, take my meds, monitor my symptoms and enjoy life the best I can. None of us knows how much time we have left and I think that’s by design so that we make this precious gift we’ve been given count. So that’s what I’m resolved to do:) Hang in there!