Well... unfortunately this blog finds me with a low grade fever and muscle pain... prednisone withdrawal has officially started. I'm thankful it waited until have the weekend. I'm trying to find my inner strength to get through this... hopefully by Thursday or Friday I'll start to feel better.
We got a NOT GOOD phone call today. My blood work came back from my doctor's appointment. Although my CRP (c-reactive protein, which indicates inflammation) lowered slightly (it is still about 8 times the normal range), my white blood count started to elevate again (this I expected) and my creatin-k count (muscle enzyme) is elevated and out of normal range again (this I did not expect). So in a nut shell I have to go in two weeks and get my blood work done... if the levels have risen again we need to go through the process of getting funding approved for me to take another Rituxin infusion ASAP. In my last blog I talked about starting a new drug, but unfortunately the clinic is not ready to administer it and probably won't be for a little while.
So after the phone call, Chris and I were kind of bummed. The creatin-k count seems to have a direct relation to the decrease in prednisone from last month. I'm hoping the Rituxin infusion doesn't wear off completely so I have to go back on prednisone.
We expected this "phone call" at some point, I just hoped I had at least another month before the Rituxin wore off. Although we're trying to stay positive, its getting old after battling this disease for a year and a half. I looked at the calendar for the next few weeks and I average 2 doctors appointments a week... not something to look forward too. We were able to schedule the echocardiogram and ECK for next Monday, February 22. Hopefully that test will go well without a glitch and we can have another "area" marked okay.
Good news though... we're going to Chris' friend's, Lucas, engagement party of Saturday. Lucas is a good friend from high school, who Chris hasn't been able to see since our wedding. I know he's looking forward to seeing his buddies and a "distraction." Prayers that I will be able to accomany him. Its not many times that Chris feels comfortable "leaving me alone" or that we can go to a group get together. Positive thoughts for a good time! :)