My husband and I were wondering how they'll address protocol too. Full patient compliance is a very difficult thing to achieve. At my site a couple of people have been kicked out of the study because they stopped coming in. Personally, I'm getting sick of the monthly draws, and really hated the change in the phone surveys. Yet, I can't imagine NOT doing the draws or surveys to stay atop risk assessment of potential problems like ITP.
I've had 2 years of infusions, and am 6 months into year 3. So far no relapses, and I haven't done a third dosing course...yet.
Grumpster, I'd report that to the neuro. When you say pseudo relapse what does that mean, something just occurs for a few hours? I'm in Arizona, hot as you-know-what in summer. In the past, I would have minor symptoms like fuzzy eyesight, exhaustion, some uncoordinated movement, but in general it was brief, occurred outdoors at the peak of the hot day, or was later in evening after a long day. This summer, it's been a little different, and these "minor occurrences" are worse. Nothing serious, and again, they're brief. I mentioned the happenings to my neuro and study site, and while they may be new symptoms, they haven't occurred over a long enough time span, so they're never official "episodes" or "relapses". They think it's just my nemesis, the summertime heat.