It's really a hard decision.

There are many things that can help you live better with this illness, and no doubt that you can gradually adjust to it.

But, all that being said, it is definitely much better to live without it.

The question is for what price. And only you can decide how debilitating it is for you and what potential price you are ready to pay.

Of course you may be lucky and have no ill effect from the steroids, but you do have to take into account all the possible options.

I can tell you that 3 years ago, I decided to take steroids, being fully aware of all the potential risks, because I knew that it was my only hope to have my normal life again.

I ended up not only not responding to it, but having severe deterioration in my condition, and severe osteoperosis as a result of the combination of high dose steroids and immobilization.

Yet, I don't regret my decision. I only regret putting my trust in someone who did not know how to recognize early signs of worsening, and stop this treatment on time, when it became obvious that in my specific case it is not only not beneficial but deleterious. (A rare but possible reaction).
Someone who decided that I am in "remission" when I was in a respiratory crisis, not despite, but because of the treatment he gave me.

Steroids are being widely used in every field of medicine. When used wisely they can save the lives and improve the lives of many patients.
The fact that my specific illness, responds to steroids in a rare and paradoxical way, did not cause me to stop using them when required for my own patients.

I do not treat patients with MG, but do not hesitate using steroids in patients with other autoimmune diseases. They work rapidly and many times can be tapered off very soon after there is a good response. Most patients, with some life style adjustments do not have serious short or long term side effects from them. As long as they are not used in high doses for prolonged periods of time, they are quite safe.

If you do decide to try treatment with steroids, there is an excellent book, written by a physician and her sister (who had to take steroids), which I highly recommend to anyone who is either treated or treats with steroids.

http://www.amazon.com/Coping-Prednis.../dp/0312375603