It's been years since I've posted in the forum but something made me look today and I saw this old thread. I and my wife for the shot way back in August of 2017. This was just a couple months after the good doctor passed away. We got the shot from his friend and fellow doctor, (can't remember his name to save my life) and that was weird. This doctor is primarily a pediatric doctor. Picture to adults in their late 50s sitting in a pediatrics's waiting room!!!
Anyway, I got the shot for my CCH and my wife got it for her fibro and arthritis. We both felt immediate relief and that relief went on for about four months for both of us. We were told that the shot wouldn't do much for the wife's bone on bone pain and it really didn't. but for the joints that weren't that bad, it REALLY helped. I went completely pain free for about four months and then the shadows slowly started coming back along with full on CH attacks. The only side effect either of us saw was that I had pretty bad thrush for a couple weeks with is typical for any large dose of any steroid, so no biggie really.
Sadly for us, having to go to OKC just wasn't a realistic option. We spent 52 hours on the road, 27 of that driving. With the two $300 shots, we were about a grand down. To do that three times a year just wasn't doable.
Since then we've discovered the beauty that is vitamin M and not we're both doing that and it's been going great for just over two years at this point. All I can say is find what works and exploit the HELL out of that, regardless of the risk. It's your life.
