Things Are Looking Up!

Things are going good. I am holding at 5 mgs of Prednisone and my health is holding. I have been doing more physical activities since it is getting warmer and my body appears to be holding up very well as long as I don’t overdo it.

I have a red spot that slowly (about six months) is moving up my right leg. It started in my toes and then progressed to my ankle and now is in my shin. I have no idea what it is but appears to be some kind of inflammation. The Dr. thought that it was gout and treated me for that, but the gout medicine didn’t do anything. He now thinks that it is some kind of inflammation so he had me switch my Prednisone from 2.5 mgs in the morning and 2.5 mgs in the evening to all in the morning. (5 mgs) I have been taking Meloxicam 15 mgs since April 30th which is a nonsteroidal anti-inflammatory drug. To be honest it really hasn’t helped. The thing that really appears to help is lots of physical activity! I helped my sister move and when I got home I thought for sure my leg was going to be terribly swollen and red, but instead it looked almost as good as when I first wake up in the morning! Surprise! Apparently physical exercise helps whatever it is. What makes it worse is sitting down all day and not moving around. I can’t wait to see what more consistent exercise can do.

I don’t know if it is just the drug change or the more activity, but I am starting to feel joint pain, especially in my toe joints, knees and sometimes my hands. It could be because of the constantly changing weather, or perhaps because I am taking the Prednisone all at once. I’m not sure. I think I am going to call my Dr. soon and let him know I want to go off the Meloxicam and go back to taking the Prednisone twice a day. That really seemed to work the best for me.

I think that overall things are looking very positive! =)

Really loosing it, Then finding it again!

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