Well, my daughter isn't getting better . Her CK is now up to 4055. Pred. is still at 25mg. and Imuran 100mg. Plaquenil is 200mg. Mon-Fri, 400mg Sat and Sun. Now not only is she losing clumps upon clumps of hair, she is developing acne, and light sensitivity from the florescent lights in high school, she uses 50 SPF with UVA and UVB protection. She had an unexplained nose bleed this week, a huge purple bruise 2" X 2" on the inside of her elbow with a hard lump. Went to Dr. figures a blood vessel twisted and caused the hematoma.
I am so tired and angry!!!! Will there be one day, just one day where she can be relaxed and enjoy being 13? I don't want to bury her beside her best friend who passed away 4.5 years ago.