Those of you close to us know Jordan isn't responding well to Orencia. She saw the opth on 2/22 and her right eye was flaring. Left had a few cells but not like the right. She had her third Orencia infusion on March 6. Her labs were also done at that time and her inflammation markers doubled in 4 weeks. And, she's on prednisone. This is not like J at all. Prednisone has always been able to keep things under control.
During the last infusion J did something she hasn't done in almost a year. She reached for my hand when the nurse started her IV. She was kinda off at this appointment. Very quiet and reserved. Not typical Jordan.
Over the last 2 weeks she has decided to fight me about meds. She doesn't want to take them anymore. After 7 years, I don't blame her. She does this every once in a while and usually I let her go a few days but with her labs a mess and her eyes, I can't allow it this time. While she understands a lot about her diseases, I don't think she fully understands what can happen when she stops her meds suddenly. Especially prednisone. Even a slow wean off prednisone, like I did last summer, can go very, very bad.
I'm not sure what our next move is going to be. She goes back for to check her eyes on Thursday. I'm hoping she's clear but I know how this disease works. We are tapering eye drops right now and she's down to 1 a day. I'm hoping the left eye didn't decide to flare up.
Through all this, she still smiles.