I have no long, rambling entry today, but I do have something to share:
The Embody program: Beyond Lupus.
The Boyfriend heard mention of it on a television commercial (I think). You may also hear it referred to as Rethink Lupus. The website contains an initial screening for a clinical trial of a drug called Epratuzumab. Do not dare ask me how to pronounce it, I have no idea!
There is a ten minute or so screening questionnaire on the web site. I like this because we can determine if I should bother going to a participating facility. Lupus/SLE can make that difficult, especially during flares. They also tell you the closest joint you can use to participate. You do want to have things like a med list, date of onset, other illnesses and that sort of thing when you sit down to fill it out.
The trial is a year, and there is the potential for later entries. There may also be a two year extension where everyone gets the drug after the trial, which will be super great if it does what it is supposed to do (bind to a protein on mature, malignant B cells in the immune system and get them to quit making a mess of your life, as I understand it).
It is important, in general, for people to take part in clinical trials so that we can get good drugs into the market and to people that need it. That is not just glurge designed to get you to sign up, it is also true. You do need to be fully informed of risks and benefits, and I intend to be so informed before I sign on for this.
I do not know how the trial will go, if I will actually participate, if I can say anything about it to you here if I do, or anything much yet. But as a chance to get better, or at least help get a drug out there that can help somebody, I feel like I have to try. And it is exciting to be faced with the idea of changing this up and trying something that may make that real difference you and I need.