ILD(Interstitial Lung Disease)and Lupus??

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Regular Member

Date Joined Oct 2008
Total Posts : 261
   Posted 11/2/2009 10:19 AM (GMT -6)   
Hi all. I recently had a PFT test come back abnormal so my dr has ordered a CT scan to check into why. When I went to get the scan done I noticed she put evaluation for ILD on there and where I thought I knew what it stood for I wasn't sure exactly what it was about. After researching I found its called Interstital Lung Disease and can occur with and without lupus. I was wondering if anyone else has experienced this and what happened? My tests were done mainly due to shortness of breath especially when exercising and sometimes when eating. If anyone has any info please let me know! Thanks. -Brittanee
*Lupie Britt*
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; Dexamethasone Nasal Spray- 3 wk intervals; vitamin- once daily; Protonix- 40mg once daily; Neurontin- 300mg once daily at bedtime; Dexamethasone suspension for ulcers;  excedrin migraine- as needed.

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 11/2/2009 11:37 PM (GMT -6)   

ILD is not a disease but a general catchall for different lung ailments. It is common with myositis diseases as well as lupus and it was thought I had the problem 4 years ago. PFT tests and ultimately a right heart catherization showed my lungs were OK but my weakened diaphragm muscles were imitating pulmonary hypertension.

Shortness of breath can have many other causes. Hopefully your tests will reveal what is causing the distress.

MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
Remain optimistic and you can overcome the odds.

Veteran Member

Date Joined Sep 2005
Total Posts : 1744
   Posted 11/3/2009 1:52 PM (GMT -6)   
My mother had MCTD, and eventually developed ILD as a complication of the overlap diseases.  Not sure exactly which one caused the ILD (could have been SSc or Lupus or both).  Unfortunately, my mother passed away from Acute Respiratory distress (an extreme result from the ILD).  ILD is NOT terminal in every case; in fact, many cases associated with AI disease can be fairly mild.  It is something that needs to be followed.  My mother was diagnosed with it relatively late, and it was so out of control that the normal meds didn't help her much.  There are better meds out there now to treat it.  In fact, I've read that enbrel (and perhaps some of the other biologics) may play a role in preventing the progression of ILD (perhaps by decreasing inflammation in and around the lungs?).
Please know that I didn't tell you about my mother to scare you.  She was an extreme case, and that result certainly doesn't happen to everyone with ILD.  There can be some serious ramifications, though, if you didn't follow up with it.  That's all.   I don't currently have ILD--was assessed based on interesting scarring in my lungs, but I had a complete pulmonary work-up with a ct scan, so there is a good baseline to use if any changes should occur in my lungs in the future.  Everyone, even those with no sx, should have a comprehensive physical including a pulmonary physical--especially with the high incidence of respiratory disease in this country.
Best of luck to you.
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Lupus
Current Meds: Enbrel, Methotrexate, nexium, tramadol, nasonex, Nifedipine, Folic Acid, Tylenol PM

Regular Member

Date Joined Jun 2009
Total Posts : 66
   Posted 11/27/2009 6:24 PM (GMT -6)   
I am so glad that I saw this post!
I have been having shortness of breath with exertion that seems to be getting worse and happening with shorter exertion periods.  I have a history of asthma but these times don't really feel like attacks.  I had a normal chest xray for other reasons about a month ago as well as a normal EKG and now my rheumatologist suggested I get PFT's done to make sure nothing is going on.  I was beginning to think though that maybe I was just being overcautious or maybe it was just me not being in the best shape since all this happened!  I was starting to wonder whether I should go through the expense of getting this test done, until I read this post.
Thank you so much everybody for the initiation of this post as well as the information given by the repliers!
Diagnoses- UCTD 2009, ovarian cysts 2008, asthma 2001
Daily Meds- Plaquenil, Prednisone, Vitamin D, Wellbutrin, Glucosamine Chondroitin 

Regular Member

Date Joined Oct 2008
Total Posts : 261
   Posted 12/14/2010 11:59 AM (GMT -6)   
I posted this a while ago and the CT scan I had after the PFT test was normal. However, within the last week or so I developed pneumonia and pleurisy out of nowhere and was put on a 5 day treatment of Zithromax as well as Naprosyn for pain. What Im wondering is if maybe this is somehow associated with the abnormal PFT and if ILD can occur with a normal CT? My rheumy is having me get a repeat CT scan in a few weeks to make sure the treatment worked.
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009--Current Meds:Plaquenil-200mg 2x/day, Keppra-750mg 2x/day, Prenatal Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Zantac (mint) 150mg 2x/day, Colace 1x/day

*Forever_His_LadyBug**I <3 Mr. Officer, cookie Monster, Thing 1 & Thing 2** xoxoxoxoxo You all are my life and I am eternally greatful. You keep me going each day :)
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