Interstitial Lung Disease and Autoimmune Diseases

@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!

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!

@rbear
Very interesting.
I can relate to the difficulty in ensuring the specialists get the information they need. I have spent days trying to ensure they have all the results they might need...and then discovered they prefer to read from paper than online at least in one instant, and the other guy apparently doesn't have access to the centralised Government system for medical results. A bit of a worry. I have not indulge in ChatGP.

Thank you so much for your words of encouragement. I haven't had a diagnosis yet. Do you know I'd they pick up a marker for ILD, that means, in combination with auto immune markers that you definitely have a ILD?

@narelled23 the ILD was diagnosed after the CT scans, and PFT results. Look at ILD as the symptom. The underlying cause for the ILD was found through a combination of a bronchoscopy and specific blood test results where the autoimmune issue was discovered.

@rbear
Thank you. I very much appreciate your calm response. 🙏

@narelled23 -I’ll be praying for you. I hope you can get speedy diagnosis and treatment plan. You can download Open AI’s Chat Gpt on your phone. Or you can access through a computer browser like Chrome, Safari or Edge. That can be done on your phone or laptop. The lap top might be better if you want to bring a print out to your next appointment.

Can anyone with an autoimmune caused ILD comment on their experience with treatments with and without prednisone? Especially as relates to the lung disease component. I’m just going into month 3 post rituximab infusions and have now weaned off prednisone. None for two weeks now. So far my severe ILD has stayed stable without the prednisone. The rituximab usually kicks in about months
3-4 to see how well it’ll work. I’ll see my rheumatologist later this month and Mayo pulmonologist late May or early June. If I need an additional therapy I’d like to try something besides the prednisone as it really did a number on my bone density. Thank you or any insight on your experiences. I’m finding this recent string of ILD postings valuable as I navigate this path!