Hello. I have polymyositis with ILD, Jo-1 antibody. Got the worse of the worse. Your question is intriguing. It is too late once you are dead. lol. Before that point, it depends on your quality of life.
So my first question to you, is where are you at with the disease and which type do you have? IBM has major stem cell work going on. They are seeing good results. Most poly is treated with prednisone and as that is weaned, with prednisone sparing drugs. Many get one round and that is it. When you have my version, it is a constant battle of flareups, increased prednisone, trying any and all sparing drugs and doing what one can to keep the ck as low as possible. If you get lucky it might stay in the normal range for a while.
The side effects from some of these meds seem worse than the disease. So it is a matter of choice. I am dwindling but have not given up yet. On oxygen or room air if I literally do nothing. Lots of oxygen if I want to walk a short distance. Pulmonary pressure is rising and I am looking at suffocation or congestive heart failure. I keep going.
It is never too late to treat. Depending on when it is caught, you can save what is left. Polymyositis does not kill a person. All the side effects and organ damage does it. I am interested in your story if you wish to share. You can write public here or send me a personal message, whatever your comfort level. And if it is that time to to stop treatment I understand that as well. I already had some time with hospice. I can help there as well. My thoughts and wishes to you, Karen
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