Understanding Sarcoidosis and Dealing with the Treatment

As my treatment plan has continued, I've been trying to better understand Sarcoidosis and to get a sense of how long I'll be dealing with this disease. The problem, I've found, is that so little is really known about Sarcoid that getting clear information is difficult. Even my doctors, who are knowledgeable about treating the disease, are always careful to say that the treatment plan is based on trial and error because there is no clear undertstanding of either why people get this disease or how to effectively treat it across the board.

Yesterday I had my checkup with the pulmonologist. For part of the appointment we spent time going through one recent article from The Cleveland Clinic, that gives perhaps the clearest overview possible of Sarcoidosis and what I'm dealing with. The article reviews all of the current understanding of Sarcoid and addresses directly the fact that so little is yet known. Despite all the unkowns, it was helpful to read something that at least addressed the disease systematically and explained what is happening. The article is available at http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/pulmonary/sarcoidosis/

After we reviewed the disease, we reviewed how I'm doing on the high-dose steroids. My doctor thinks it is starting to work, I'm definitley coughing less. So, he wants to keep me on the high doses for another 2 months. Yikes.

The problem, though, is that the steroids have their own side effects. While I'm not getting the classic weight gain or moon face this time, I have developed some issues with my heart that kind of make me wish for moon face! They are not so bad that I have to stop the steroid, but we do have to add one more pill to help my heart deal with the steroid. And, because I have a famly history that is riddled with heart disease, he wants a cardiologist to look at me again just to be sure no permanent damage is going on. So, one more pill, one more doctor.

My last question for the doctor yesterday was, "Am I going to have to live like this forever, or will I get better someday?" He promises I'll get better. I'm holding him to that promise and praying for sooner rather than later.