It's been 4 days since I stopped taking steroids. It's been 2 days since I saw my transplant doctor. So far, so good. And now I wait to see if the lung GvHD has been tamed.
It takes 14 days for steroids to leave a person's system. The last time I stopped steroids I managed 12 days of easy breathing.
People tend to think that once the steroids stop, you immediately go back to feeling like yourself. There's one person in my life who insists on telling me that I should feel better because I'm off steroids. I've explained to them how steroids work and what the side effects of being on and off of them are. They keep insisting that I should feel better.
Here's the reality: I have trouble concentrating. I have problems forming complete thoughts some days. I'm tired in a way that only weaning off of steroids can leave you. I've put on 20 pounds since starting steroids last July. My hair has fallen out, grown back in, and fallen out again. I've developed cushingoid features. The muscles in my lower body have deteriorated significantly. I have general muscle weakness. My adrenal glands aren't functioning properly. I shake uncontrollably some days. The list goes on.
Most of these symptoms are temporary.
A check of my cortisol levels revealed that I'm producing next to none. This could mean adrenal insufficiency. My transplant doctor checked in with my endocrinologist regarding my very low levels. The current thought is that I'm too close to having stopped steroids to make a definite decision. I'll go back in a month and have my cortisol level rechecked. In the meantime, I'm supposed to report any side effects related to adrenal insufficiency to my doctor.
I'll be vigilant and I'll continue to go about my life as I usually do. One day at a time.