Refractory TIF-1 Gamma Positive Dermatomyositis

My husband was diagnosed 4 years ago with Tif-1 gamma positive dermatomyositis. Since his diagnosis I have watch him wither away to half of what he used to be. When we first started this journey, everything felt positive like he was going to get stability with this. But after countless treatment regimens and countless refusals from insurances that feeling has turned from positive to negative. He is listed as refractory now due to no improvement with the countless regimens that have been tried. He recently was admitted into the hospital to undergo Plasmapheresis, for the chance that it would help. We were on the positive side of the possibility of it helping. Upon discharge it was a blessing. He felt better. He could walk without staggering, being extremely short of breath, and extremely weak. Now he was still short of breath and weak but nothing like he had been. We were looking forward with positivity on that little bit of help. But all that was short lived. Within a week he was back to where we started the week prior. Sleeping for 12- 16 hours a day, waking up feeling like he had already worked all day long. Which since all this he hasn't worked in past 3 years. Walking from our bedroom to the bathroom and being even more exhausted even with his cpap on which has had to be increased several times. Brushing his hair and taking 15 minutes to do that when prior wasn't even a good minute. I work in the medical field every day, so unfortunately, I'm used to seeing this in other people and feeling helping for them. But it hits completely different when you're lying next to your husband not knowing if you're going to wake up with him or without him because his lungs and heart have gotten too weak to function. Is there anyone else out there with REFRACTORY TIF-1 GAMMA POSITIVE DERMATOMYOSIS?