1. < Autoimmune Diseases

Autoimmune attacking my lungs

Posted by noahs @noahs, Mar 11, 2019

Hi. I’m new in this group. I was diagnosed in June 2018 of autoimmune disease attacking my lungs. This finally gave the answer to my long journey with my pulmonologist on why I had very frequent and strong lung infections. I also was diagnosed with interstitial pneumonitis in 2014. I was given prednisone 20mg
In June and now am tapered off to 5 mg. I I am also on Cellcept - two tablets twice a day. Unfortunately though my lung infections is one after the other and I am
On strong oral antibiotics every time ... sometime for 20 days of two different antibiotics. These infections are causing me great physical and psychological pain. I am interested to meet other patients with the same autoimmune disease as I have. T

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

estrada53 | @estrada53 | Mar 22, 2019
In reply to @noahs "I was also diagnosed “undifferentiated mixed connective tissue disease.” But what is hitting me most now..." + (show)
@noahs

I was also diagnosed “undifferentiated mixed connective tissue disease.” But what is hitting me most now is autoimmune attacking my lungs. I’m allergic to Bactrim . Just started on this journey June 2018 when finally they diagnosed me with autoimmune and cellcept and prednisone gave me a better life . Though when flare ups come, it’s bad .. but not as bad as before when they did
Not know yet that I am autoimmune. So there was definitely a progress there

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Hello everyone. I know how difficult it can be and if we are allergic to a drug we need, it's even more difficult. I was diagnosed with an auto-immune disease - sarcoidosis - in 2004. As I read all of these posts, I am not seeing that anyone is getting a lung biopsy, or am I wrong?

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1 reply
oakbourne | @oakbourne | Mar 23, 2019
In reply to @estrada53 "Hello everyone. I know how difficult it can be and if we are allergic to a..." + (show)
@estrada53

Hello everyone. I know how difficult it can be and if we are allergic to a drug we need, it's even more difficult. I was diagnosed with an auto-immune disease - sarcoidosis - in 2004. As I read all of these posts, I am not seeing that anyone is getting a lung biopsy, or am I wrong?

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I got a lung biopsy that diagnosed me with BOOP PNEUMONIA!

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ckeys | @ckeys | Mar 25, 2019

Hi John, since your infections are mostly in your lungs, I wonder if any of your doctors have mentioned using inhaled steroids and inhaled antibiotics (like tobrimyacin). These have less impact on tour body systems and focus on the main infection/weakness. I also wonder about immunotherapy helping you, like IV immunoglobulin. Have your IG levels been tested?

Just more food for thought for you… Wishing you the best, what area of the country do you live in

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1 reply
terri672 | @terri672 | Mar 26, 2019
In reply to @ckeys "Hi John, since your infections are mostly in your lungs, I wonder if any of your..." + (show)
@ckeys

Hi John, since your infections are mostly in your lungs, I wonder if any of your doctors have mentioned using inhaled steroids and inhaled antibiotics (like tobrimyacin). These have less impact on tour body systems and focus on the main infection/weakness. I also wonder about immunotherapy helping you, like IV immunoglobulin. Have your IG levels been tested?

Just more food for thought for you… Wishing you the best, what area of the country do you live in

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Do some research on stem cells and lung function. There have been some cases where stem cells have healed lungs... Wish you the best...

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aleer252 | @aleer252 | Mar 16, 2023
In reply to @oakbourne "samandhuck, I am praying you feel better. Be careful with Prednisone. I think it's an awful..." + (show)
@oakbourne

samandhuck, I am praying you feel better. Be careful with Prednisone. I think it's an awful drug and I knew one girl who died from it. She took hugh amounts of Prednisone and it put her in the grave. Why do doctors give it out like Candy and won't give it to their own kids? I hate autoimmune diseases. I think we live too clean a life. A Peruvian Shaman told me that. Kids don't play in the dirt any longer. No more playing hide and seek and running around. They would rather sit on the couch and play with their stupid I- Pad Cellphones. It's destroying their brain and they have no social skills. Playing in the dirt and getting dirty will help our immune system not attack everything in sight.

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I agree. I have graves and ITP. I was put on steroids for four months, it ended up causing me me to be rushed to the hospital with a massive upper GI bleed. The cause was bleeding ulcers which I got from long term use of steroids. Today was my final day from tapering!!! Never will I take them again.

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oakbourne | @oakbourne | Mar 16, 2023

I had a lung biopsy. Dorothy

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dianececile1 | @dianececile1 | 1 day ago

Hello, I am new to this group. Recently diag. with lung disease. It is something that women over 65 get from grass, dirt and other outside things. I have many polyps in both lungs also thick mucus. I am currently on nebulizer twice a day albuterol and saline solution. Also have a what I call a huff instrument which is supposed to loosen up mucus. So far nothing is happening. Anyone else having the same problem? Thank you for any help you can give me

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | 1 day ago
In reply to @dianececile1 "Hello, I am new to this group. Recently diag. with lung disease. It is something that..." + (show)
@dianececile1

Hello, I am new to this group. Recently diag. with lung disease. It is something that women over 65 get from grass, dirt and other outside things. I have many polyps in both lungs also thick mucus. I am currently on nebulizer twice a day albuterol and saline solution. Also have a what I call a huff instrument which is supposed to loosen up mucus. So far nothing is happening. Anyone else having the same problem? Thank you for any help you can give me

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@dianececile1 Welcome to Mayo Clinic Connect! What autoimmune disease do you have that may have sparked this?
Here is another support group on lung disease the may help you.
https://connect.mayoclinic.org/group/lung-conditions/
Members in this group may be more able to help you with the different devices you mention.

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Mentor
Sue, Volunteer Mentor | @sueinmn | 1 day ago
In reply to @dianececile1 "Hello, I am new to this group. Recently diag. with lung disease. It is something that..." + (show)
@dianececile1

Hello, I am new to this group. Recently diag. with lung disease. It is something that women over 65 get from grass, dirt and other outside things. I have many polyps in both lungs also thick mucus. I am currently on nebulizer twice a day albuterol and saline solution. Also have a what I call a huff instrument which is supposed to loosen up mucus. So far nothing is happening. Anyone else having the same problem? Thank you for any help you can give me

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I think I might know what the doctor is diagnosing. Let me see if he used any of these terms - bronchiectasis, MAC or MAI, "Lady Wyndeme Disease" or "gardener's lung"?

The symptoms you describe are bronchiectasis, the official name for the disorder. There are many of us here on May Connect in the support group called "MAC &Bronchiectasis " https://connect.mayoclinic.org/group/mac-bronchiectasis/
An excellent place to start is here:
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
It looks like you have a smart doctor (pulmonologist? ) who is knowledgeable about the condition, since they have already recommended one of the pillars of staying healthy with this condition- Airway clearance (using the nebs plus the device to get the mucus out.

There is much to learn about staying as healthy and strong as possible with damaged lungs. Please click on one of the links in this post and join our group. You will find our members helpful and encouraging. You might want to join one of several ongoing discussions on airway clearance.

Did the doctor also take a sputum culture to see if you might have a lung infection?

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