Brochiectasis and Autoimmune Disease attacking the Lungs

Posted by noahs @noahs, Mar 11, 2019

Hi. I’m new to this group. I registered in autoimmune and then I saw this group. I was diagnosed bronchiectasis in 2005 ... it was just starting then. But I have
Asthma since childhood. On 2014
I was further diagnosed to have interstitial pneumonitis. And on June 2018 my doctors confirmed I have autoimmune disease attacking my lungs. This confirmation finally found a solution to my never ending lung infections. Although I continue to suffer frequent lung infections my asthma attacks are milder. But I am
On continuing antibiotics for my frequent infections and steroids and Cellcept for my autoimmune. My pulmonologist advises me to keep my lungs clean ... meaning to expel as much phlegm by nebulizing so my bronchiectasis does
Not act up. Easier said but end result seems to be a losing fight for me. I am paranoid too about going out of my home afraid to catch just a single germ ... with so many viruses going around. But I would like to live a more normal life. Any suggestions ?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

egayle187 | @egayle187 | Mar 12, 2019

@noahs...it sounds like you've been hit with so many problems. I'm sure the people on this site can help you. Have you tried Postural Drainage? There are some position suggestions on Youtube. My lung problems were caused by acid reflux, so I sleep upright and follow a strict diet. I have had asthma for 45 years and found relief from nebulized medications.I also use an herbal lung cleanse. Good luck finding relief.

Terri Martin, Volunteer Mentor | @windwalker | Mar 12, 2019

@noahs Hello Noah, and welcome to our group. Question: have you been tested for Alpha-1 by any chance? As for fear of going out in public, I was paranoid for awhile also. I limit my public outings during the flu season. I have a spouse that does all of the grocery shopping for me. I have found most of my infections in the past came from dining in restaurants. Numerous hands have handled the glass and dishes you eat and drink from; and the server has handled a multitude of other patron's dishes. So, there is quite the assortment of opportunity to pick up germs there. I always question any potential guests if they have a cough or sniffles or any illness before I permit a visit. As you know, avoiding an infection is key. Also, do not visit people in hospitals or nursing homes. The deadliest bugs are caught there. Please take the time to read over older posts as there is a treasure trove of info in our conversations. You can click on @katemn, or @windwalker, (myself) for good info. You can also click on other member's names that you may like to follow, there are lots of knowledgeable folks in this group. There is a 'Discussion' board with listed topics to choose from on the main Group page. As far as keeping your lungs clear, do you nebulize sodium chloride (saline) by any chance?

noahs | @noahs | Mar 12, 2019

@egayle187 , @windwalker ... Hi ..
Thank you for your response ... it made me feel welcomed. May I share with you my visit with my pulmonologist today.
She said my symptoms/complaints re my lung infection ... she thinks is actually my autoimmune disease attacking my lungs acting up. My autoimmune doctor was
Tapering off my prednisone last feb 19 from 10 mg to 7.5 mg and now 5 mg a day. It seems my immune system got stronger and is again attacking my lungs.
My pulmonologist brought back my prednisone to 10 mg. Although I did
Not think of this, I was not surprised when
My doctor told me her opinion bec I
Have read about the effects of prednisone tapering in Mayo Connect Lung Diseases. How grateful I am to have joined this support group. I have googled my illnesses so much but this group gives me a different kind of knowledge. Next week I will see my autoimmune doctor who is in coordination with my pulmonologist. I’m
Hopeful now that my present health woes will be resolved soon. And my doctors will
Find a better way to taper me off prednisone or to delay it for awhile. Again I enjoy being in Mayo Connect. One can
Talk about ones illness without feeling one is “whining” too much 😊

noahs | @noahs | Mar 12, 2019

Btw I nebulize with saline solution, ambroxol, and combivent ampules. I also have a personal chest percussor machine. And I also have a lung flute. Plus of course several inhalers. I live in Asia ... so I do not know if this is the same medical protocol in the US.