Day Off and Doctors?

My very sweet friend asked me to blog so she wouldn't have to call and grill me, so here goes...

I took the day off today because I thought I'd spend a lovely day seeing both the rheumetologist and the pulmonologist in one day. I'm just a glutton for punishment...

For the past 4 months or so I've been my rheumetologist's guinea pig. I did not do well on Prednisone last Spring so we decided to try some other options. The first trial was Methotrexate, a very old chemo drug that used to be the standard drug for breast cancer (of course). 2 months on this resulted in a lot less hair but no improvement. So, I was moved to Arava, another lovely chemo drug that resulted in nose sores and nose bleeds, stomach issues and a 13 pound drop in my weight in 2 months, but as of today, the pain is worse, the voice is worse, and the breathing is much worse, so clearly not the cure-all I was hoping for. I'm supposed to stop the Arava immediately.

After several hours with my team, the plan now is to do yet another Pulmonary Function Test. My last one in June showed me at 70% of capacity. My pulmonologist at first told me that in his experience this is not bad, but then laughed and took it back when I pointed out that he is a pulmonologist and only sees people with terrible lungs. Seriously?! So he wants a new PFT to see where I am at this point. I'm worried. In July I walked 39 miles in the Avon Walk. Last Saturday I had to sit down and rest after walking 3 miles on my treadmill, going up the stairs at work makes me wheeze, and I have to continually restart conversations because the not breathing makes me forget what I was saying.

Depending on what the PFT shows I'll either start another round of high doses of Prednisone, which I cringe at, or I'll have to go back to the cardiologist because the Pulmonologist says the Sarcoid may have moved to my heart, which would explain the exhaustion and problems breathing, which I cringe at more and am currently ignoring. I know they are right. The Rheumetologist was considering having me do Humira injections, but he is really worried about the cancer recurrence risks and nothing shows that Humira really works for pulmonary Sarcoid. Apparently the only thing that works well is high doses of Prednisone over a period of 4 months or so.

That is where I get scared. My Pulmonologist has promised me stronger sleeping pills while I'm on the steroids, but I also hate the weight gain, moon face, cuts and bruises and manic mood swings. My dh worries so much when I'm on this stuff, but we both want me better, so I guess we'll do what has to be done.

My next day off will not include visits to ANY doctors!