Yesterday I was able to speak with the person in charge of the study. After describing my particular eczema experience, what it looks like, where exactly it's located etc, she told me I do qualify for the study! She emailed me the informed consent papers to read through and go back to her if I have any questions. It was 21 pages long. Here are some interesting things to note:
- looking for 600 participants
- with chronic hand eczema that does not respond to topical creams
- 6 month long study - after reading the informed consent it's actually 1 year, 9 months
- must be on two forms of birth control
- I can stop the study at any time for any reason
It's interesting because I never really thought about wanting to have children in the next two years until I'm told I can't get pregnant while being in this study. It totally makes sense because they are unaware of possible birth defects while on this drug. I went off birth control about 15 months ago. Not to get pregnant, but because I didn't want to be on any medicine. I am taking nothing right now except the occasional ibuprofen for headaches or body aches. It's been nice to not be altered.
It would totally suck to know for sure I can't get pregnant for the next two years (if I do the full study) and I only have a 50/50 chance I'll get the real drug instead of the placebo! Hubby and I spoke last night and he thinks I should do it. He said if it helps my hands to feel better, it's worth it. I'm just not sure yet. It seems like a really big deal. I don't trust the FDA anyway, so it doesn't matter to me that it's not FDA approved yet. What does matter to me is I might suffer from bone density loss. I know your body can rebuild that and I'm young enough to have time to reverse that.
The first meeting, where they actually determine if I'm perfect for the study, is an entire day of tests. They take a blood sample, tons of x-rays, photos of my hands, samples of the eczema to determine I don't have anything else on my skin and an allergy patch test. I think all of those would be fantastic to have done. I did an allergy patch test when I was a kid and I've only had x-rays at the dentist and once at the chiropractor years ago. I guess I can always start with that and see if I'm even right for the study and go from there. I'd hate to waste the doctors time though, but they are sure to have a lot of people eventually drop out. I'd have monthly meetings and a few benchmark visits are all day.
I have two other people to get medical opinions from on this study: my mother-in-law and my boss' wife. It's a little nerve-wracking, but if I get the real drug and it really works, my life will be changed and that would be wonderful. The kinds of things that bother me now are: getting manicures, going into the ocean, preparing foods, handling a lot of paperwork etc. All of those irritate my hands or dry them out. I have to wear latex gloves when I prepare foods, especially anything raw. I cut a tomato earlier this week without gloves and it burnt the hell out of my finger. I just want to be normal again!