Interstitial Lung Disease and Autoimmune Diseases

Posted by spiritnsoul @spiritnsoul, Jul 18, 2021

Hi, im trying to connect with other people dealing with Interstitial Lung Disease, and Rheumatoid arthritis auto immune diseases

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Also concerned with how medications for these diseases impact seniors having osteoporosis

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@spiritnsoul

Also concerned with how medications for these diseases impact seniors having osteoporosis

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Hello, @spiritnsoul Welcome to Connect. We’re a group of people who try to help each other through their health journey with information, resources, and tips on what works and doesn’t work for us. But were not doctors so we can’t diagnose or prescribe medications.
You’ve asked about the medications affecting seniors with osteoporosis. Well, that’s me! I’m a senior who was diagnosed with an autoimmune disease about 3 years ago. Initial treatment is 5 days of high-dose steroids followed by oral steroids. Of course i developed osteoporosis . Actually I’m having a DEXA scan this afternoon to see if I’ve made any progress with countering the osteoporosis.. i also take calcium, Fosamax for strengthening bones, and daily walks.
What are you taking for the autoimmune diseases and for bone health?

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Where and when did you receive your diagnoses of interstitial Lung Disease and Rheumatoid Arthritis? My husband has antisynthetase and these are two of the immune diseases that are part of it. Antisynthetase Syndrome affects the complete body. Don's started in the lungs but he has also had the blood affected and his muscles. Currently he only has problems with his feet. He doesn't have diabetes but he does have neuropathy of his feet.

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@nancykay1888

Where and when did you receive your diagnoses of interstitial Lung Disease and Rheumatoid Arthritis? My husband has antisynthetase and these are two of the immune diseases that are part of it. Antisynthetase Syndrome affects the complete body. Don's started in the lungs but he has also had the blood affected and his muscles. Currently he only has problems with his feet. He doesn't have diabetes but he does have neuropathy of his feet.

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I have been diagnosed with Connective Tissue Disease which has affected my lungs with Interstitial Lung Disease, also Rheumatoid Arthritis and skin issues .

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@nancykay1888

Where and when did you receive your diagnoses of interstitial Lung Disease and Rheumatoid Arthritis? My husband has antisynthetase and these are two of the immune diseases that are part of it. Antisynthetase Syndrome affects the complete body. Don's started in the lungs but he has also had the blood affected and his muscles. Currently he only has problems with his feet. He doesn't have diabetes but he does have neuropathy of his feet.

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Yep @nancykay1888

It has been a while since you last posted about your husband's diagnosis of Antisynthetase Syndrome. How is he doing?

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I’ve been treated with ILD and RA for 5 years. Taking Cellcept and Plaquinil.
My symptoms are fairly well controlled with some flares involving mostly one shoulder.
I have sharp pains in hands and feet that come on when doing tasks then leave then stop. My lungs are good with occasional coughing which I feel is allergy related.
The RA is different everyday, my best days are when I get up and start moving immediately upon awaking. Using a jacuzzi several times a day, staying warm during cold weather and cool during high temperatures.
I feel fortunate that my symptoms and damage are manageable.

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@jilliemo12345

I’ve been treated with ILD and RA for 5 years. Taking Cellcept and Plaquinil.
My symptoms are fairly well controlled with some flares involving mostly one shoulder.
I have sharp pains in hands and feet that come on when doing tasks then leave then stop. My lungs are good with occasional coughing which I feel is allergy related.
The RA is different everyday, my best days are when I get up and start moving immediately upon awaking. Using a jacuzzi several times a day, staying warm during cold weather and cool during high temperatures.
I feel fortunate that my symptoms and damage are manageable.

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Jill, I'm tagging @spiritnsoul to make she they see your post about living with Interstitial Lung Disease and Rheumatoid Arthritis. As you prove, getting moving helps with RA, but it can be a challenge to move when you're feeling stiff and/or in pain. How do you encourage yourself to move on the tough days?

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I have RA and Interstitial Lung Disease with significant scarring and nodules in my lungs. Recently after a bout of covid in October that lasted three weeks, I have had coughing with phlegm, weakness. I started drinking pineapple juice, helped somewhat. Is that anything I can take or do to reduce the scar tissue in my lungs?

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@sgp21

I have RA and Interstitial Lung Disease with significant scarring and nodules in my lungs. Recently after a bout of covid in October that lasted three weeks, I have had coughing with phlegm, weakness. I started drinking pineapple juice, helped somewhat. Is that anything I can take or do to reduce the scar tissue in my lungs?

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Good morning, and welcome to Mayo Connect. We are a community living with a variety of conditions, trying to help one another along the way.

It is interesting that pineapple juice helped you – I had not heard of that before. Many people use Mucinex (guaifenesin) to help thin the mucus and make it easier to clear out. If you try it, be sure to use the kind with no other medications added.

The bad news is that the scarring you have, whether from RA (yes it does sometimes affect the lungs) or another cause, is permanent and will not go away. The good news is that there are many things you can do to keep the rest of your lung tissue as healthy as possible.

Do you have a pulmonologist? They can refer you to a Respiratory Therapist who can teach you lung clearance techniques & breathing exercises that are safe for you to do. These help slow the progression of disease & improve oxygen uptake so you feel less weak & tired.
Airway clearance helps get the mucus out and keep it out – very important because infections breed easily in the hidden recesses of damaged lungs. Breathing exercises strengthen & improve the efficiency of your remaining healthy lung tissue.

Have you been referred for respiratory therapy?
Sue

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my wife has RA and interstitial lung disease and has been on 1 liter oxygen for almost 3 months and I was wondering if there is a recommended test to determine if she still needs oxygen. also can you have a respiratory therapist visit our home for best breathing exercises.

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