Sunday, July 10, 2011

Exciting News!

Have you ever wondered why Sarcoid blogs stop getting posts after a while? I think it is because life gets busy and dealing with the sarcoid becomes second hand. I think it may also be because people get better and the stop thinking about it all the time. For me both are true.

Since my last post things have really changed for me. If you remember back in the fall I stopped taking Imuran for an “undisclosed” reason. That reason was to get the medication out of my system so that my amazing wife and I could have a baby! Believe it or not number seven is on the way. Yes, you heard me right, number seven. We are very excited. I have three boys and three girls so there was a lot of anticipation to see if the boys or girls would win the numbers game. Turns out the girls made a come from behind victory… it’s a girl! We are all very excited, especially because this is our last. For those of you who think we are nuts to have seven kids, you’re probably right, but I’ll tell you… our lives are very full and all in the best ways.

I did fairly well off of the Imuran with a few bumps in the road. I switched off of the Prednisone to Medrol (methylprednisolone). It is about the same thing, it just works in a slightly different way at a different dose. It has actually worked very well for me and I have been stepping down on the dosage. I got down to 2 mgs before I had a flair up (recently) and am getting that back under control with a bump up to 8 mgs and step back down to 3 mgs. I figured that I will probably get back on the Imuran now that we have the baby on the way. With any luck I will be off the Medrol by winter. Here’s hoping.

I talked to my pulmonologist (Lung doctor) about sarcoid in more depth. I notice that when I have flair ups it is often in my lungs and then some random place on my legs. I asked him if it was possible to get these in dangerous locations such as my liver, brain, etc. He told me that it was possible and he had a friend that died in his 30’s because he had sarcoid and didn’t treat it. For some time I have been debating if I should just stop taking the medications and deal with the sarcoid because I hate some of the side effects… I guess this answers that question. I have a lot to stick around for.

Speaking of which, I went on two hikes with my daughter this spring and summer. It was really great to get back into the mountains and smell the fresh air. I love the mountains and my daughter and I had an amazing time. Nothing like memory building, looking forward to more.


Oh, just in case anyone is keeping track, I am currently on 200 mgs of Plaquenil (2 x daily), Prilosec 20 mgs (2x daily), and Medrol 3 mgs daily. The Prilosec stops the… uh… digestive issues that Medrol causes me. Works great!