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Interstitial Lung Disease and Autoimmune Diseases
Lung Health | Last Active: Mar 23 10:08am | Replies (68)Comment receiving replies
@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.
Replies to "@narelled23 yes, I’m an open book and you can ask me anything!:) I’ve been right where..."
@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)
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@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