I found a few snippets here and there on autoimmune (AI) disease on this forum and thought it would make sense to start a thread on this topic. So far, I have found sosocal, annieo, and msue5 as fellow travelers down this road, with the latter two suffering more complications than you would wish on your worst enemy.
On the bright side, there are some recent studies which offer more than anecdotal reports. In JAMA Oncology of February 2016, a study of 30 AI patients on ipi found 27% had flare-ups and 33% had irAEs (more than general population) for a response rate of 20% (like general population).
At the 2016 ASCO conference, Menzies reported on 119 AI patients, mostly on pembro. 38% flared (6% grade 3) and 29% experience other immune-related adverse effects (irAE) for a 33% response rate. A subgroup of patients on immunosuppressants before starting the trial suffered 37% irAE for a 40% response. Conclusion: rheumatological disorders are more like to cause irAEs than other AI diseases.
In a video for the Cancer Research Institute, Dr. Weber of NYU advocated for the use of PD-1 or PD-L1 for AI patients who had been on prednisone but were weaned because it causes less collateral damage than ipi or interleukin. (June 27, 2016)
These studies all involve Stage IV patients as there was a response to measure. I am Stage IIIc now so for me it would be a shot into the dark. Although I do not qualify for a trial, my doc has no problem putting me on pembro.
Anyone else in the same boat?