Hard to believe it has already been three years since I posted this first comment in an effort to connect others out there with this terrible disease to help each other.
I have found this group tough to follow at times, as I worked through my own issues. Hardest part for me was getting off prednisone. I ended up taking it for ~18 months. It took another 18 months for me to begin to feel like my old self again.
But I think my story so far has been very fortunate. No relapse yet and hope that takes a long time to happen. I have been hesitant to add this, even though it is positive, because I know others are still struggling with getting this into remission and keeping it there. My experience was so acute that one doctor speculated that it could go away just as fast as it came because it was so acute.
So all I can do is thank God for giving me the strength to march on and I pray for the rest of you to likewise find the strength you need to persevere and all get healthy again.
Thanks to LS4 for leading the charge on creating a support group. I trust that those that participate find it meaningful and helpful!!
My wife recently began working at 23andme.com. They are working with pharma companies to help find cures for corner case diseases. The big issue for them has always been getting a patient population for study and test. 23andme helps them do that, dramatically reducing the costs of research. Let’s hope this innovative approach to genetic testing finds its way to our group one of these days!!