The Sarcoidosis really flared up since my last post. I was so frustrated! My expectations were that I would be almost completely under control within a year. I had reached 5 mgs of Prednisone which is manageable and was really hoping to get back to my normal physical life… and drop all this extra Prednisone related body fat, but that wasn’t to be. My body wasn’t quite as ready as my hopes were. Since I went so long, trying to hold out, I ended up having to go back up to 30 mgs! I was so angry! The prednisone mental noise is very intense and increases with every milligram, so to go back up to 30 after being at 5 was a real hear breaker!
We ended up increasing the Imuran after I talked through my fears of cancer with the doctor. His comment was that only 2% of Imuran patients get cancer, where 100% of Prednisone patients experience very strong side effects, and some that can last with you for your life time. His biggest concern was to get me of the Prednisone, or at least down to 5 mgs per day as soon as we reasonably could. When I heard that the cancer risk was only 2% my fears were greatly reduced. I am now on 200 mgs of Imuran per day and it has really seemed to help.
It is now four months later and I am all the way back down to 5 mgs of Prednisone and holding it very well! This is the best I have felt since I started this journey. I don’t know if I will end up being that 2% that get cancer (in which case this totally wasn’t worth it) but if I had it to do all over again I would have started with the Imuran, and NEVER have taken the Methotrexate! I hate that stuff!
So for now… I’m doing fairly well and am looking and taking up some more serious exercise. My lungs are hurting a little the last few days, which I don’t usually feel. I believe it has to do with my having strep and having some warts burned off. These both trigger the immune system and I am guessing that it is causing the Sarcoid to bug me, although I have been watching my ankles (where I usually see the problem most) and they have been fine. The only other side effect that I have been noticing is that I am getting tiny red sores, not unlike pimples, running from the sides of my nose down to the corners of my cheek. (Strange) I have also noticed them at the outside corner of my left eye. Nothing too big, just something to watch at this point.
Things are really going well again! Better than ever! Here is hoping!Michael
