Well, this is a milestone for me. All hell broke loose last June, then I was firmly diagnosed with RA in early / mid July. And only NSAIDs in the intervening time. I've been getting real annoyed / worried that the treatment has been delayed. In July it was only in my hands and feet, now my elbows and knees hurt also; figuring this is a progressive disease, it made me real nervous.
So, getting everything set up for this drug trial has taken a lot of time, there were lots of details to make sure I qualify for the trial. Now I feel like maybe the whole program of treatment might finally be in gear. Again, this trial is Methotraxate, Actemra, or both. I was "randomized", not sure which group I am in or which drugs I am actually getting. 50% chance of being in a group that gets both, so I was hoping for that.
I sure didn't understand very well what "infusion" means, but you all probably know. This was in a large room with maybe 20-25 stations where (apparently) most of the people were receiving cancer chemotherapy treatments. The normal infusion process for me will be every 4 weeks, maybe 3 hours each time. 1/2 hour setup, 1 hour of active infusion, 1/2 hour of settling time, before and after blood samples, repeated vital signs, etc. The trial coordinator and nurse were great, I was very comfortable. There were a few hangups in the process, so it took much longer yesterday; I discovered I am the first patient in this trial at this location, so it is understandable that there was a need to make sure the tests/process were all correct.
I didn't notice any effects, felt a little light headed, but I think that was because of the experience rather than the medications. Oddly during the night, and this morning I felt like the symptoms were actually down a bit, I could walk a bit better, and my wife said I probably had one of the least disruptive nights of sleep in weeks. Somehow I think this might be due to a "placebo effect" rather than the medicines started to take effect; maybe I was just cheered up because finally there are some DMARDs in play for me.
Anyway here we go, I am hopeful .... in large part because of the reports I've read here on the forum from everyone. Seems many report that the RA can be "controlled" and people can become symptom free if the right medicines or combination can be discovered.
Roland
I hope this works for you Roland.
Thanks for your input into the goings on with regard to this type of treatment.
My Doc wants me to start something similar and will make a decision in about two months.
Roland, when I had my first infusion of remicade I also became light headed. I think it's pretty standard for this to happen with infusions. Wishing you the best of luck. I hope you keep us posted Roland.
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