Posted 10/4/2021 11:25 AM (GMT -8)
Hi everyone, I'm sorry if this is not the proper forum to post this on, but it seems to be the closest related forum to the topic of Mixed Connective Tissue Disorder, so I hope you can indulge me.
I'm a 50 yr old male, who for the past 5 years has had Ulcerative Colitis. My treatment is currently with 100 mg Imuran and Mesalazine granules. I'm in clinical remission, but not endoscopic or microscopic - still working to get there.
A couple years ago, a Rheumatologist diagnosed me with Mixed Connective Tissue Disease. In that regard, my symptoms are pretty mild. Some relatively minor aches and pains, a bit slow in getting up out of a chair, mild lack of energy. But to be honest, I always attributed that to my Ulcerative Colitis, or lack of exercise, or just getting old. I often say I look 10 years younger than I am but feel 10 years older. Still, I have enough energy to do what I want to do, I just gripe and groan a lot!
Recently, my Rheumatologist decided to put me on a 2-year course of Plaquenil, which he called an "insurance policy against Lupus." I've been on it about three weeks. But he has been running a bunch of blood tests as well, and one has concerned me.
My CK (Creatine Kinase) test came back with a score of 283. The normal range is 46-171. I had never heard of CK but when I researched it, I got pretty nervous. My doctor says this is not extremely high, but has nevertheless booked me with a Neurologist. He says he wants to see if I may have Myositis. Meanwhile my C3 and C4 tests were normal, which I understand are primarily looking for Lupus indicators. Urine and other bloodwork thus far seems ok.
Now, my amateurish research seems to indicate anyone with MCTD can have an elevated CK, but also the Plaquenil can elevate CK itself (though my Dr. said no). I don't exercise (other than a daily 1-mile walk), so that's not responsible for the high number.
Does anyone have any thoughts on this? He's ordered some more tests, in part to see if my CK comes back normal this time. But I won't see the Neurologist until Nov. 1 and until then, all sorts of things are running through my mind.