Interstitial Lung Disease Community Group

Interstitial (in-tur-STISH-ul) lung disease actually describes a group of disorders, most of which cause progressive scarring of lung tissue. This eventually affects your ability to breathe and get enough oxygen into your bloodstream. Beyond this, the disorders vary greatly (mayoclinic.com).

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Lungs & Respiration
/ Interstitial Lung Disease Support Group

Conference notes - dealing with lung disease

Group Founderkelli1b
kelli1b
Ok, SUCH AN AWESOME SEMINAR TODAY! Dr. John Routes (pronounced root-ez). So lets start here:

All things that wheeze are not asthma! People are getting mis-diagnosed with asthma all the time! To find out for sure get a methocolaine test (sp?).

For sinus issues you must have good nasal hygiene! Do steroid nasal spray and sinus washes DAILY. Do not use: augmentin, cipro, etc. In CVID, mycoplasma is the most common culprit and has a unique virulence in us. use - ZPack, Erythomicin, clarithromycin, levaquin. (sorry about the spelling). When on long term abx, take a probiotic!

DO NOT do labs to check for mycoplasm, must do a culture (i didnt' write down why but he was very clear, the reason could be in the pics of the slides I took)

For GLILD - no one knows the optimal treatment but steroids do NOT seem to work.

Must do open lung biopsy (fine needle does not get enough tissue)

GLILD causes fibrosis so early treatment is KEY to effective treatment!
deleted_user
deleted_user
All of this is so interesting to me and encouraging! I have found in alot of the notes you have shared that my doctors have either done or are currently doing alot of the recommended things. I am currently being treated with Rituxan and cyclosporine for my lung disease. I had an open lung biopsy in January and they determined that I have an overabundance of T-cells--but nothing more serious like lymphoma. I just had my first Rituxan treatment last week and have one scheduled each week this month. The only bad thing is that they are holding off on the IVIG since the Rituxan counteracts it. (It kills B-cells.) So, based on the slides you provided it looked like the patient had used Rituxan for 6 months and showed marked improvement. I have been so short of breath lately that I'm just hoping this treatment plan will help. Thank you, Kelli, for posting all of this wonderful information!
merivalentynedebruin
merivalentynedebruin
I will be starting rituxan for glild shortly. Would appreciate info from anyone who has done this. Thanks
Group Founderkelli1b
kelli1b
Hi, I am sorry for the very very very late response! We seem to have much better luck on the FB GLILD support group, have you found it?
Wendee
Wendee
Kelli1b what is the FB SUPPORT GROUP CALLED PLEASE
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