Hey y’all, since my last series of Rituxan ended a month ago my Rheumatologist said I could reduce my Prednisone to 5. Everything was going fine until I got to the 5. It was apparent the Wegeners was rearing its ugly head in my mouth. I have already experienced tooth loss because of this disease, but this was different. If I was chewing something it felt like I was biting into glass. Anything cold sent me into orbit. I upped the Prednisone to 7.5, and still have sensitivity to cold. As I was reducing this did not have any problem at 7.5. I am brushing with Sensodyne and that helps. I am scheduled to see my ENT who diagnosed me originally. He is a brilliant Harvard educated man who studied and knows this disease well.
Other than the mouth, after the last infusions, I feel stronger than I have in a long time. I am accomplishing things I have let go since sick. I am also getting out more and just seeing people, places and things help. But I am using good judgement and doing things in moderation. My Rheumatologist has scheduled me for another series of four infusions in the fall.
As we all know that darn prednisone blows your face up. The other day a lady complimented me by asking what my ‘no wrinkle’ secret was. Only your Wegeners friends know what that secret is.
Be Well.
Masha