no right answer
I do not think that there is a right answer to how to give steroids because each person is different and you have to do/have done what works for you. You do not say how long you have been getting the solumedrol pulse doses, but if it is more than three times, it likely needs to be changed a bit because it does not appear to be working well enough. You also do not say if you get back to near normal or much better than baseline and then get a lot worse after three to four weeks. From what I have understood, the best principle to guide treatment is to try to do what minimizes “down time” time in which you are considerably worse and restricted in what you can do–this limits ongoing, accumulating damage so that you can cumulatively heal rather than start healing and stop, get more damage, and start back at the beginning again. Limiting downtime can be done with doing the pulses closer together than every seven weeks–for example every four weeks. It could also work to do the steroids once a week instead of five days in a row. Most on-going high dose pulse steroids for immune mediated diseases are given either once a month or weekly. Most of the doses that were talked about at the symposium were 1/2 gram or 1/4 gram if given weekly. I heard a lot of different doses for those clustered together over 3-5 days once every 3-5 weeks. My gut feeling is that if one gram a day for five days does not work, that it would likely be better to change the schedule rather than increase the dose. This is already a lot of steroid. See what others say and talk with your doctor, but the main point to remember is to try something in which you at least stay stable and do not have times of getting significantly worse.
WithHope for a cure of these diseases