Sorry if I am repeating myself, but I think I earlier posted this in the wrong space. I was wondering if anyone else has been diagnosed with interstitial lung disease due to lupus. Interstitial has been very hard on me, robbing me of 70 percent of my lung capacity. My doctor hopes benlysta will help my lung condition as well the lupus, but it's too early to tell. Would appreciate other views on this.
Thomas Franklin (PAUL)
Hi :).yes I have … The meds that helped my breathing the best were cytoxin chemo therapy), cellcept and methotrexate. I’ve been on every immunosuppressive treatment but because they would either not work for very long oe not at all my rhumy would take me off of it. Good luck , lung and airway involvement is very difficult and can completely complicate our quality of life, I definitely sympathize. .good luck ! Xo
Thanks for the info. I did cytoxin for quite a while and it didn't seem to help much. Hopefully the benlysta will help.
Paul
My lupus was actually diagnosed as a result of my interstitial lung disease. I had an awful cough, couldn't even speak w/o coughing, hard time breathing, etc. I saw a pulmonologist initially who ran lots of blood work where all of my autoimmune markers were off the chart. I had to have a thoracic lung biopsy where they diagnosed me with cryptogenic organizing pneumonitis and was concurrently diagnosed with mixed connective tissue disease with lupus as the predominant disease.
They felt that the lung disease was a direct result of the lupus - the lupus attacking my lungs. I was initially on cellcept, plaquenil and 60 mg of prednisone. It took almost a year for my lungs to get better and then other symptoms of the lupus kicked in - fatigue, joint pain, swelling - so I am now on plaquenil, 10 mg prednisone, arava and have had 5 benlysta treatments. We went with benlysta because my lungs had improved. Had my lungs not gotten better, my dr wanted me to go on rituxan - they felt that would be a better drug than benlysta for interstitial lung disease. It is a long, frustrating road - good luck to you!
Thanks
I also have Interstitial Lung disease due to lupus. I've lost 50%... we have not discussed another other treatment other than inhalers and breathing treatments.
Same thing here, as far as I know inhalers and breathing treatments and sometimes IV Solumedrol when my copd gets really bad, they said I developed interstitial lung disease as a result of repeated bouts of severe lung infections, like mrsa pneumonia, strep pneumonia and so on, from being on various immunosuppresant therapies over the years, all of this caused significant scaring in my lungs which is what interstitial lung disease is, the damage is permanent and not reversible. I am curious to know how the benlysta is helping your lung function.
I will let you know as I progress with benlysta treatments.
Paul
hopeful said:
Same thing here, as far as I know inhalers and breathing treatments and sometimes IV Solumedrol when my copd gets really bad, they said I developed interstitial lung disease as a result of repeated bouts of severe lung infections, like mrsa pneumonia, strep pneumonia and so on, from being on various immunosuppresant therapies over the years, all of this caused significant scaring in my lungs which is what interstitial lung disease is, the damage is permanent and not reversible. I am curious to know how the benlysta is helping your lung function.
Have bronchiectasis (acquired adult form of cystic fibrosis), an interstitial lung disease. It's primarily from the Sjogren's but I'm sure the lupus plays a part. My lungs are good with treatment--nebulizing and inhalers. Have you been to a pulmonologist--more appropriate treatment than a rheumy. Really don't think Benlysta (over-rated) is gonna help.
My 25 cents.
I agree with you, I think benlysta is way over rated too. My rheumy said my lupus is too severe for it to be of any help to me. A good pulmonologist should be treating the lung disease not the rheumy, I don't know why I didn't think of it mysel
USAGURL said:
Have bronchiectasis (acquired adult form of cystic fibrosis), an interstitial lung disease. It's primarily from the Sjogren's but I'm sure the lupus plays a part. My lungs are good with treatment--nebulizing and inhalers. Have you been to a pulmonologist--more appropriate treatment than a rheumy. Really don't think Benlysta (over-rated) is gonna help.
My 25 cents.
Thanks for the viewpoints. I will see how the benlysta treatments work. My rheumatologist said it has also helped some people's lungs.
Thomas Franklin