Wednesday, January 11, 2012

Well that plan went out the window!

We knew J wasn't really getting the full benefit with Remicade anymore. She had decided that she wanted to stick it out until Spring to see if she was swelling because she had been sick. It was possible since an infection ramps up the immune system. And, we all know an over active immune system is what causes autoimmune arthritis in the first place.

Jordan has spent much of her Winter break outside playing. Riding her bike or scooter and climbing the tree. On Sunday she went for a ride with her friends and their dad. She kept up and she was proud of herself. Later that night she was miserable. Both knees were warm and obviously swollen. She sat with me for a long time Sunday night and had me rub her legs. Monday morning she was sore but she tried to go out to play. It didn't last long. She stayed inside with me most of the afternoon while Matthew and the neighbor kids played outside.

Tuesday we got up at 6:30 to leave the house by 7:15 because J had her infusion and appointment with Dr. G at 9. J didn't get up right away. She was very stiff and sore. She didn't want to get out of bed and I had to help her get dressed. That doesn't happen at all anymore so I knew she was hurting. We drop Matthew off with my Dad and we head to LA. On the way there Jordan tells me she thinks she needs to switch to Orencia. She knew her body wasn't responding to Remicade anymore and she doesn't like not being able to keep up with Matthew and her friends. So, Orencia it is.

For those keeping track, this is Jordan's fourth biologic in a little over 3 years.

Right now both knees, both feet and her right wrist are swollen. Her back, neck and hips are hurting too. And, she's back on prednisone. Hoping it's short term, I do not want her on this stuff long term like I am.

Tuesday after her infusion she wasn't feeling well. She had a headache, her stomach was a mess and she just felt ill. This morning she woke up feeling the same way. I had an appointment this morning and I hated to leave her but I didn't have a choice. By time I got home 6 hours later she was dressed and bouncing around.

For those following me, I saw my rheumy on Monday. I'm still not under control but I am better. I can feel the Remicade wear off right around 4 weeks post infusion so we're moving me up from 6 weeks to every 4. We tried 8 and 6. We can up my dose if 4 week intervals don't help but if that doesn't do the trick either, I'm going to Orencia.

Me and my girl. We're 2 peas in a pod. I wish we could get our treatment done at the same place. It would save us so much time and gas!

1 comment:

Veronica said...

Hope Jordan gets to feeling better and that this is her magic drug!