I am a 53 year year old female in fairly good health up till May of this year, that was diagnosed in September with NSIP. Since the biopsy did not specify which type, I have been treated for the cellular type. I am been on mycocephalate (forgive the misspelling) since diagnosis and I have titrated up to 1500 mg 2x a day and dapsone. Yesterday, I found out that my lung function has decreased from 40% to 20% since June when I first went to the doctor with shortness of breath and low O2 levels. I also have low blood platelets, my hematologist did a bone marrow biopsy which showed nothing wrong. My liver is slightly enlarged along with my spleen. No cancer is suspected according to CT scans. My lung dr is wanting to start me on retuxan infusions pending insurance or funding . My question is what other options do I possibly have other than a lung transplant and why is he wanting to try retuxan? I don't like the sound of the possible side effects
Your description of a significant decrease in lung function over a short period of time, while on therapy, is worrisome especially with the additional findings of low platelets and enlargement of your liver and spleen.
I suspect that one reason that your lung doctor has recommended the use rituxan is the decline in your lung function on the previous therapy. The side effects of this drug are similar to the other drugs in its class, of immunosuppressive agents.
The best recommendation I can give is that you request of your lung doctor that he seek a 2nd opinion from another interstitial lung disease expert, in your behalf, from either the University of California Medical Center in San Francisco (Dr. Talmadge King) or from National Jewish Health in Denver, Colorado (Dr. Kevin Brown).
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