I was only diagnosed seven years ago, but I’ve had symptoms of still’s disease form 14 to 27 years ago! I’ve tried every medication out there and nothing has been effective enough to reduce the steroids.
Now I have steroid induced Cushing’s, high blood pressure, high cholesterol, steroid induced osteoporosis, leaky gut syndrome (caused by the steroids too), which means my liver is damaged, and steroid induced cataracts.
My professor of Rheumatology wanted me to have a stem cell transplant to try to kick the disease into remission hopefully. I’m in a wheelchair and feel pretty dreadful most of the time, but the stem cell transplant felt far too risky. With a one in 14 chance of death, I wasn’t prepared to risk it.
So instead I’m currently waiting for trial medication to see if I can get better control of the disease. Fingers crossed the funding is approved before the steroids do anymore damage.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.