Rheumatoid Arthritis Support Group

Hi, I am on Orencia, in my ninth month of treatment. I'm having problems with headache and nausea afterwards. Please write me and let me know if you have had these problems, and what, if anything, has helped. I'd truly appreciate it. Here is the entry from my journal today:

Last infusion the nurse told me she ran the Orencia at a slower rate and she gave me more fluids after to hydrate me. I had absolutely ZERO nausea or headache like I usually do.

Today, they said my veins didn't stand out enough and they hydrated me for 45 minutes prior to the Orencia. Granted, I drank TWO water bottles prior to them sticking me, too!
Anyway, they ran the infusion over 30 minutes and only hydrated me a bit afterwards. As I was getting ready to leave, my head started hurting a tiny bit. On my way home, I felt just horrible, like I was so tired I was going to pass out at the wheel. My head continued to hurt. I got home, drank some cherry Kool-aid (my favorite), and took a short nap. When I woke up my headache was gone, but I did not feel like myself. I had to take son to the eye doctor and so we left early to go eat lunch first. We had to wait 25 minutes to be seated, and while we were sitting my headache came back with a vengeance and I was getting nauseous from it. I was actually sitting in a chair with my head in my hands. We were finally seated and I ordered a soft drink with caffeine, thinking that usually will help a headache. I felt better in about fifteen minutes and ate a pretty good lunch. We left for the eye doctor, and as I 'm driving the headache starts coming back! I was miserable at the eye doctor, and son couldn't drive home because he had his eyes dilated. I called my rheumy's office from the eye doctor. I told the infusion nurse that this hadn't happened the last time when Teresa had run it slower and hydrated me after. She said that it should not make any difference since they hydrated me so much before the Orencia(which I disagree with). She actually argued with me and asked me if I might be stressed! I was getting so mad. I didn't feel good and she is questioning me? I told her that I wanted my infusion done the next time like Teresa had done it. She still insisted it should not make a difference. I was feeling too bad to argue with her any more. She advised me to go home and alternate tylenol and ibuprofen, and next time maybe take a benadryl prior to coming for my infusion. She also told me to try it when I got home, so I also took one Benadryl. I went off to sleep and slept about an hour and a half. Woke up and no headache! BUT I am still feeling yukky. Its like nausea with no vomiting and food actually makes me feel better, not worse. I am just so irritated iwth this nurse who just didn't listen! She is going to talk to my doc and call me back in a few days. However, I have plans of my own. Before I walk into that infusion room next week I'm going to ask to meet with one of the nurses privately (they infuse about 8 patients at a time in a big room). Then I am going to lay down the 'terms' of my infusion!
Posted on 07/21/08, 08:07 pm