Mission Accomplished!

18 11 2011

We had pretty good news today!

My scope went really well and everything looked good. While that doesn’t show what’s going on with the whole middle part of my intestines, it bodes pretty well. The steroids are working. While they aren’t supposed to be a long term drug, at this point they are recommending that I stick with them for a while.

I still need a CT scan but I’ll get that at home. Hopefully I’ll get it before my appointment with my new doctor, Dr. Rubin, at University of Chicago. Mayo was pretty excited that I was going to be seeing him which makes me happy. He specializes in hard to treat cases, which I am.

At this point, unless I go off the steroids and cause a flare, I don’t really qualify for a lot of things. You need to prove a flare before you are allowed to take Tysabri or be a part of clinical trials. The steroids always work well for me so my inflammation is down. As long as the CT scan looks good, I’ll be ok for a while.

The prednisone is killing me though, so they are letting me taper my dose. I’ll go down five mgs a week until I get to twenty, which is far better than forty. The thought is that if I get a maintenance dose working for me the Cimzia might stretch out for a while longer, which would be fantastic.

Overall, this was a pretty good appointment. It sucks to have to be on steroids, but the side effects of those are far less than that of Tysabri or some other scary meds. This will buy us some time until new drugs can be approved and put on the market.

Before my appointment today I tried to walk around and take pictures of Mayo to give you guys some idea of the scope of this place. It’s incredible. It’s huge and there is art and everything is shiny and new and the people are just so nice.

Walking up to one of the hospital buildings

It was super windy and we literally almost blew through these doors.

Chihuly glass hanging from the ceilings

Andy Warhol has quite a bit of art hanging around here...

Anyway, I know I’m blasting you with pictures but this place is hard to comprehend. That’s just a little taste. Now we’re relaxing before our drive home tomorrow morning. I’m looking forward to being home, seeing the dogs, and taking less steroids tonight. Success.

 

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2 responses

18 11 2011
Michelle Kelley

Sounds weird, but I love Mayo. It is a wonderful place. Not fun to get to the point of having to be there, but once you’re there it is a good place to be. Hope that makes sense. Glad you got some good news today and will go to see a new doctor. I’ve been thinking of you; thanks for updating!

18 11 2011
Jillian

Praise God! I’m glad that things are lookin’ up!

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