I would, at your age, elect to continue the low dose steroids if it made that big a difference to my quality of life.

Your comparison to opioids moved me to respond. I am on opiate therapy and will likely be for the rest of my life. It enables me to have a quality of life which I otherwise would not be able to approach. I have never enjoyed television, and I really do not know what I would be able to do other than lie under an electric blanket and stare at the screen, the pain and resultant disability are that bad.

My doctor carefully explained to my husband and I what we were in for long term when he moved me to time release morphine. I know how lucky I am to have a doctor who was willing to monitor this as the neurologists refused to handle pain management and just wished me a tearful farewell. Empathy is great, and rare enough in doctors, but not all that helpful in the end. Our PCP has known our family for many years, since he opened his practice, and was comfortable taking this on as my diagnosis is is consistent with severe pain.

I am still progressing, but at least I am able to take the increasing disability in stride without suffering from increased pain as well. And I can choose how to use my limited energy- a walk in the park with my husband and the puppy is worth the rest of the day on the sofa.

Quality of life is the main issue when treating incurable diseases. I understand that there may be other considerations in younger patients, but at a certain point it becomes the only issue.