Low and stable

I went to the doctor on Monday and let him know that I was doing well, but having a little harder time adjusting to the lower prednisone than I usually do. He was very pleased that I am now down to 5 mgs of Prednisone and said that 5 mgs is a dosage that had no know lasting (bad) affects. He said that the real danger now was to just cut off the medicine because the Sarcoid could flair right back up. He continued to explain that the longer you go without the Sarcoidosis symptoms, even while medicated, the less likely you are to have it return. He said that if I just dropped the medicine right now I would have roughly a 50% chance of it coming back. He believes that by being on the medicine for an extended period of time will help prevent it from coming back in the long run, and this is what I really want. (BTW My next doctor appointment is in three months.)

I have to admit … I am a little disappointed. I was really hoping to be totally off the drugs by later this summer. I am committed to kicking this thing permanently so if I need to continue on these medications for up to a year (from what the doc said) then this is what I’ll do. My doctor said that when I am feeling really good with no symptoms for a long period of time then he will start pilling of the remaining medicine one step at a time.

The doctor said that at this stage the Azathioprine was doing most of the work of keeping the Sarcoid under control. I am still concerned about the Azathioprine and the cancer risk. We are also considering having one more child and Azathioprine has strong warnings about pregnancy, even if it is the man taking the drug. If I am going to be on this for as long as a year I’m going to have to have more answers on this. My doctor isn’t the type to answer questions that he feels is questioning his judgment. This is one of those questions, so I am going to have to look elsewhere.

My sister had her biopsy, but since they are in a small town they have to send it away for testing. I’ll let you know what they find, but I am guessing that it is Sarcoid. That beats cancer which is the other options!

So for now I figure it’s time to start exercising better and eating better. It has been kind of a rollercoaster for me as far as this goes. I am feeling stronger now and the medicine is low enough that I’m not feeling the prednisone rage. Time to rock and roll! (Slowly though, going to take it slow for now.)