I travelled for the first time since getting sick last November. A good friend got married in Portland, so my husband and I drove down there for three nights. It’s just a 5 hour drive and I didn’t even do most of the driving, but I felt extremely exhausted for the entire trip. It was a nice wedding, but overall it was pretty tough for me. I was surprised at how bad I felt the entire time.
I’m not really supposed to travel right now for a variety of reasons, the main ones being that I shouldn’t be too far from my doctors and healthcare and I’m not supposed to be doing anything that tires me easily. I actually had a trip to Australia booked and planned for this past March that I had to cancel due to my diagnosis. I’m pretty disappointed that I didn’t get to go because I’ve always wanted to go to Australia.
I definitely won’t be planning any further trips anytime soon. It’s just way to exhausting and I really can’t predict how I’m going to feel at any given time. This is especially true given that I’m still on prednisone and currently trying to wean off it.
I went down to 25 mg of prednisone today, the lowest dose I’ve been on since the start of January. I feel pretty bad at the moment. My body hurts, particularly my hands, wrists, and ankles. I’m really tired and lethargic, my chest feels weird, and I just feel awful overall. I’m trying to get myself to do things, but the only thing I want to do is go to bed.
I’ve read about people feeling horrible for an entire week when tapering prednisone once they get around 20 mg or less. I really hope this doesn’t happen to me, I can’t stand the thought of feeling like this for longer than a day or two. Although since I don’t really have a choice in the matter, it’s probably best if I just don’t think about it.
Some good news is that reducing my Imuran dose seems to have fixed the liver problems I was having. My liver enzymes are still too high, but they are vastly improved from last month’s blood test. My hair also appears to have stopped falling out, which is a pretty sweet bonus. If this continues to next month, it will show that my body just can’t handle the dose of Imuran that my rheumatologist wanted me to be on. I’m not sure whether I can stay on a lower dose or whether I have to switch drugs, though. At least it means that I can probably keep taking the herbal medication that my TCM has been giving me.