The results are in....

Today was my follow up appointment with Dr. Adl regarding the bronchoscopy. The results were able to rule out infection and combined with the results of the earlier CT Scan and Pulmonary Function Tests everything points to the myositis being active again.

Basically Dr. Adl believe that the myositis and interstitial lung disease that came with it has indeed advanced. There are basically three levels of pneumonitis and the level that I am at is the preferred one. It is called nonspecific interstitial pneumonitis (which basically means inflammation of lung tissue).

Dr. Adl's treatment recommendation is high doses of prednisone with a follow up pulmonary function test and CT Scan in 4 months (like 60 mg for four months....yikes).
In 4 months we will see how I am doing and at that time if there are no improvements they may switch and put me on a different immunosuppressive drug.
From past blog entries you know how much I do not want to go back on prednisone.

I did share my concern with Dr. Adl about going back on prednisone so she is going to defer to Dr. Cohen for that decision. She emphasized how very important it is that the three of us (two doctors and me) stay in communication with each other.
I learned something new; the "ground glass" which is what it has been called in the past can be reversed with proper treatment. That's good new and a good thing to focus on.

In our first office visit with Dr. Adl she recommended that we use a bed wedge and elevate the head of our bed 8-10 inches. I do not have noticeable heartburn or acid reflux so I did not immediately act on this suggestion. However, today when I asked if I needed to continue taking the heartburn/acid reflux prescription and she said "absolutely", I followed up with the question"how important is that bed wedge?" Apparently it is very important and may help prevent any additional factors from taking their hits on my lungs which are already compromised.

You don't have to tell me twice...off I went to Bed, Bath and Beyond with my 20% coupon in hand. I am now the proud owner of the bed wedge pillow.

So, it wasn't great news, but it's not terrible either....and so we continue, taking it one day at a time.

Thanks for checking in.
Kris