SLE, Lupus Pneumonitis

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New Member

Date Joined Jul 2013
Total Posts : 2
   Posted 9/17/2014 5:40 PM (GMT -6)   
I was diagnosed with SLE, Lupus Pnuemonitis in 2012. I've been taking high doses of prednisone since then, as well as disease modifying drugs. We tried Cell Cept with bad results. I had an open lung biopsy with a partial collapse. That was painful but they confirmed non-specific interstitial scarring and inflammation. My ribs are very close together, and they needed to really pry on them to get in there. It's been several months and I still have pain from that area when I breathe in. Anyhow, recent CT scan shows that high doses of prednisone are not helping. I will be starting IV Cytoxan here in a couple weeks once insurance approves. I'm pretty nervous, but I hope to have good results.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 9/17/2014 10:44 PM (GMT -6)   
I hope you get good results. That sounds like some rough stuff to deal with.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 9/18/2014 9:46 PM (GMT -6)   
Hi there just wanted to wish you well with the Cytoxan. We had a couple of members here who took it to help with their lungs and it did. They didn't seem to have to many side effects either.

I too have serious lung issues with pericardial effusions, pleurisy, and severe scarring on the lining of my lungs and the pericardium of my heart. I was put on oxygen 7 years ago. I took cytoxan too, I was on the oral type for 9 months then did 6 months on the IV form.

I didn't have the results they were hoping for. However, my lupus is really bad and I have multiple issues with it. Since it's a once a month treatment it's not to bad. Make sure you drink lots of fluids to flush the medication out of your kidneys and bladder.

Take care and if you have any more questions please feel free to ask.

DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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