Hi Danny and thank you for all the thoughts and questions here. I'll try to catch them one at a time so you can get a true picture.
The first year this began, they initially thought I was going into adrenal crisis due to a pituitary tumor I have had 2 brain surgeries to remove in the past, so they immediately put me on steroids (a 12 day dose pack) for that one time to make sure I would be okay. When it amazingly took away all the symptoms, yet ended up not being adrenal crisis, then they wanted to know what the diagnosis was for what had happened.
For that first year, I was probably on steroids about
1/4 of the calendar year. I would be off of them, get sick, go on them for a couple weeks, come off them, etc. We had no idea what was wrong with me so were trying not to use the steroids in general.
The very highest amount I ever was on during that time was 40 mg for 5 days on Prednisone. The other times I was on it was mostly 20 mg in the morning and 10 mg at night, but again, this was only for a few weeks at a time and then I would be off the steroids for a couple months mostly, and the actual majority of the time I was on steroids I was on 10 mg in the morning and 5 mg at night. For some reason, if I don't have them at night it is not enough to help me through the night and I would get sick. So I was not solidly on steroids for any length of time consistently even during that first year.
When winter hit, that was when I would say I experienced my first "true flare" where I got very swollen all over especially my legs, very weak, pretty much bedridden for almost 3 months--so sick I couldn't hold my head up. By then I had my new family doctor who we had agreed we would not use steroids until we had a diagnosis, so for the past 2 years until 3 weeks ago, I have had NO steroids at all, just using other meds like neurontin, baclofen, pain killers, lasix, and such to try to target specific symptoms that were causing the most discomfort.
Then this winter hit, and the "flare" (if that is what it really is) hit magnified by 10 from last year to the point that I have been completely bedridden for over 3 months now! Collaborating with other colleagues and doctors from Baltimore, MD, my family doctor finally got the diagnosis, but has mostly been going off of what I told her had helped me the first year. But the first year, I had only been on Decadron the one time for 2 days in the hospital under careful observation, and released on only 1 week of Decadron pills that I never ended up even using the entire week. I was completely better for months after that.
I completely agree with you that I think I am on much too high a dose right now as well as too long a period of time. Maybe to get a loading dose would have been okay, but then go down to a lower dose of prednisone to continue until it got better. But, no I have not been on steroids to the extent that you understood in what you posted to me so I apologize if I did not come across clearly enough. Rather, I have been taking short stints of steroids at various times, namely the first year of this, and then after no steroids for 2 years, I just recently was put back on them in the past 3-4 weeks.
My family doctor is planning to taper me down shortly and add in the immuno-suppressant, but she is debating which one to put me on (she told me that). She is also trying to look at our whole family situation and how it is affecting our family (such as trying to avoid injections if possible) although a week in the hospital already is not quite helping keep our family too calm at the moment!
The other thing you mentioned about
the bone density test and all that I think are very important. The bone pain I have is my chief "pain" complaint. It feels like such a deep deep pain inside my bones especially the long bones of my legs, hips, lower back, although from below my knees down is what "looks the worst" since they are so swollen I literally have water running out of the skin and they are infected from the cellulitis (I think that's what they called it).
I am not sure if I am right about
the liver enzymes, because while in the hospital they were testing things and said that my heart had fluid around it, it was enlarged, my sugar was so high they put me on insulin now, and my stomach is rock hard, giving me a burning like pain right under my right rib cage area (pretty bad at times which is pretty new to me in the past week). All the medical lingo and such is very new to me. I have an awesome GI doctor, but I will ask him this week to help me find a good hepatologist, which I am sure he will. He has been awesome for all the time I've ever known him now over 5 years. Thank you for that advice--it makes a lot of sense.
I hope that gives a clearer picture... but no, the initial year I was not o 30 mg of prednisone for a year. I was on that maybe a total of 2 months towards the end of the year and only when the flare started getting bad. I have been leery of taking the steroids because I don't want it to cause more damage like it quite apparently is at the moment.
Okay, I hope I managed to hit on all the important questions so you can help me better figure out where I need to just stop trying to micromanage my life and let the doctors do their things!!!
I sure appreciate you--and hope this is not cutting into important family time with this Easter Sunday and everything!! I can't thank you enough!
Nicki