I GOT MY LIFE BACK for a few months, I was 95% symptom free until my liver enzymes started to climb and I had to take a break from the drug for a month and had a flare (really bad one too). I have been back on the drug for about 3 weeks now and I'm feeling better (after taking a break from the drug my liver returned to normal) but I'm getting the run a round from the "guy in charge" of it all (I've never met him, so he has no idea what the last 6 months of my life have been like). Monday I go off the drug for at least a month and this "guy in charge" says that I would have had a flare even if I didn't go off the drug, even though returning back on the drug I started to improve - all a big coincidence I guess. I'll get my blood checked again on Monday, so I'm kind of waiting to see how that goes. I've been hoping that I'm on the 10mg, BUT the "guy in charge" says that even the .5 mg would have made my liver toxic, I guess thats just how my liver is. He really knows a lot about a phase II drug that I am the first to receive.
Ever time I re-dose, I have to sit in the clinic for 6-plus hours while my heart rate drops, I have to find someone to drive me home, pick up my daughter and feed her for me (I have gotten a migraine each time I re-dose). I've done this 3 times now. I'm not sure I (or my family) can handle going on/off this drug so many times if I get as sick as I was this last time, although, I'm kind of out of options. I'm told I was the first in the US to get this drug, I'm kind of wishing I wasn't. I was hoping they would take better care of me, considering I let them put an unknown drug in me. But who knows I could be on placebo according to the "guy in charge" (he's right, I might be on placebo, I just really think I'm on the drug with all I have been through and I kind of really dislike him at this point).
So, I guess this is me venting, but I really am not sure if I want to stay with this. YES I want the drug, but I want to be a bit more stable then not knowing when I might go off the drug, I've never had flares as bad as this last one and I can't do steroids while in this study. I just want to stay in remission until a cure (or ccsvi).
What would you do?