Tuesday, June 23, 2009

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.)

Friday, June 19, 2009

Hurts so good & Sister Blues

I have found that going lower and lower on the prednisone allows my body to feel the normal aches and pains associated with being overweight and being out of shape. Boy, what a feeling! Well the good news is that this is a good part of the healing process. It should feel bad to be overweight and out of shape. The drugs have masked that in the past. (At least that is what I believe) I had to reschedule my DR. appointment until Monday, so I’ll confirm with him that this is why I am felling this way. I am looking forward to getting back in shape. =)

It looks like my sister may have Sarcoidosis. (Dang DNA!) She had a bout of what they thought was Bells Palsy where her face slumped, her eye drooped and her mouth hung down. They put her on high doses of Prednisone which has given her back facial control. It may be neural Sarcoid and the swelling around her facial never appears to be what caused the Bells Palsy like symptoms. They have her scheduled for a biopsy on Monday to see if it truly is Sarcoid. Frankly I hope it is because the alternative is Lymphoma and we really don’t want that. My guess is that this is Sarcoid. I guess we will have to wait until Monday to find out.

Monday, June 15, 2009

Oops, not 10 mgs... I'm down to 5 mgs Prednisone

Oops... that was a mistype. I am at 5 mgs of Prednisone now. I take 2.5 twice a day. I see the doctor on Monday, so I'll give you an updated then.


Sunday, June 14, 2009

Down to 10 mgs Prednisone!

I just dropped down to 10 mgs prednisone! How great is that! I have had the usual rough go at adjusting but I seem to be coming out of it. I am really getting excited about this and I think I can see the end in sight! Here is hoping.

I have had an extremely active spring with a ton of camping trips; some with the scouts, some with the family and a few ATV trips with my brothers. On the latest one we ATV’ed in, camped overnight and then ATV’ed all day long. It was a bit much for me and I was fairly wiped out today, but not as bad as it could have been. I had a hard time sleeping on the hard ground without a mat but I think that was mostly because I am so overweight. (Stupid Prednisone) =) All in all I have done well.

I am looking forward to loosing this weight and getting healthy again. I’ve got to resist the urge to do too much too quickly. The phrase I have been living by for the past while is “One step at a time” and it has really worked well for me, especially when I feel overwhelmed.

So far, so good!