Hey, I was wondering what your experience has been like since we both have lupus and lung diseases. I have interstitial lung disease, which has 'ravaged" my lungs, according to my pulmonary doctor. Doctors have tried chemo with cytoxin (not sure of spelling), which failed to bring improvement. The last-chance-type approach is now benlysta, a drug designed to help the lupus symptoms but also occasionally helps the lungs. I have had four or five treatments and so far no luck with lungs.
I do not expect any improvement due to benlysta. It's just a gut feeling. My doctor recently decided to increase the dosage of prednisone from 15 MG to 30 MG. That could help with the shortness of breath issue, which has made my life very limited as far as activity. It is very frustrating and depressing.
Could you describe your experience having lived with both lupus and a lung-related problem? Do you have any advice for me as far as how to better deal with the two? Any particular medicines work well for you as far as shortness of breath or depression?
Thanks,
Thomas FRanklin
I’ve honestly not reached lung disease yet, but I have asthma. But I totally agree its very frustrating im sorry I count really help
Hi
How did you know you had a lung disease? What were your symptoms?
Cindy
I found out i had lupus 25 yrs ago. I also have interstitual lung disease, congestive heart failure stage 1, sjogrens, R/A, vasculitus, COPD, sleep apnea, anorexia, anxiety,hypothyroidism, dyspnea, depression, limited joint mobility, muscle atrophy, depression and other problems. Be careful with Benlysta, it almost killed me. Prednisone has always worked for me, but now i have the muscle atrophy. I am 5 ft 5 inches tall and weight 95 pounds. My muscles are gone, but i wouldn't change it. Iwas very active for a long time. I am only 53 yrs old. But i was told this would happen so i expected it. I am not sorry and content. I made sure i did the
things i wanted before i couldn't so i hahae no regrets.
Hi I have encountered lung problems this year. I have had shortness of breath but it seems a bit better right now. My lung test showed I have developed asthma and I have a small fluid sack on my left lung. I have been giving no medicine for I am just taking my plaquenil. I have since had my 6 month check up revealing no change. Now I have to get the scan once a year. God Bless you
Hello Thomas
I am sorry it took me so long to reply I moderate on 2 of the other sites and try and come by here at least once a week. I started out with asthma as a child then I smoked for years which did not help. I can not take prednisone for long periods of time. I had to many problems with it. I started Benlysta and will take my 5th dose the end of this month. I have seen some improvement over the last couple of weeks. I take albuterol as needed and spiriva. I also take remron and it has really helped with the depression and xanax as i need it. The trouble with most meds is they depress breathing. My doctor told me their isnt much they can do about my breathing so I am just taking one day at a time and enjoying my grandkids and the small things in life.