Just returned from my doctor's appointment, I finally get to go down to 20 mg. of prednisone! :) WOOHOO! All of my levels are hovering right above the normal levels, which is good, but not great. My doctor sent in the paperwork for me to start another infusion of Rituxin. We are going this route for now, as the other drug, Actemra, they haven't quite worked out all the kinks in regards to dealing with shipping and insurance companies. So, two 6 hour infusions are in my future! :)
The good news is that all of my joints are checking out really nicely, and even though I've gone down in prednisone, I haven't gotten weaker, which is a great sign in regards to my muscle disease.
There are signs of my disease starting to act up again, i.e. rash on my eyelids and knuckles, raynauds starting to show again, and my white blood count is going back up, but hopefully we'll get the infusion and not have to go back up on prednisone.
There are still issues with the lungs, and I'm now looking into other pulmonologists. We're unsure if my lung capacity restriction is because of my disease or weight gain of my prednisone... more to come on this matter.
So the next few days will be rough but hopefully by Monday I'll be back to my normal "self." I'm looking forward to seeing if my face deflates at all from the prednisone, as so far it hasn't.
So that's the good news (well in our world) for now, hopefully nothing crazy happens with my blood test results, but it is me, so you never know! I tend to have the best of luck sometimes! :) More updates to come later, but as of right now, we're feeling good! :)