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Wednesday, September 22, 2004

I've never been a gambler

I don't know if that makes me unusual for someone with bipolar, but I don't even play the lotteries. I just think I could better use my dollar or two to buy a coffee on the way to work.

My change in job responsibilities has me working much closer with and for the president, the one who seems to fire people on little notice or evidence. It's only been a week and I had a stressful day yesterday, when he wasn't even in the office, just calling me all the time.

I have an appointment with Dr. J. in early October to sign the papers for the pharmaceutical study. I've been thinking about it a great deal and I would be risking a lot by doing this study. It's a double blind, which means neither the doctor nor I would know which pill I would get, the placebo or the Seroquel. My concern is that I have a 50/50 chance of getting the placebo. In statistical terms, there are always some who get the placebo who show no change - hence "placebo effect". But I'm afraid of being on of the ones on the placebo who DO show a change.

I have worked very hard in the past year to get to this stage. I could be risking my job and my family situation by doing the study. I had asked Dr. J. what would happen if I was being given the placebo and deteriorated. He said we'd just put me back on the Seroquel proper and remove me from the study. However, the deterioration wouldn't be overnight, and the ramping up of the dosage wouldn't be overnight either. So I could be a few months in hell again, who knows what I am risking then. Staying in the study would be a nice way to help give something back to the "cause" of BP, helping them understand the treatments a little better. But I can't be a hero this time.

When I expressed these concerns to my husband last night, he said in this light he has decided to absolutely forbid me to take part. I know that sounds a bit draconian, but he has a lot at stake too. He has a say in what form my treatment takes because, while I am the one who will feel any changes or exhibit any bizaree behaviour, he's the one who has to see it and deal with it at the time.

My next appt with Dr. J is early October. I will have to tell him then thanks but no.

I can't risk losing myself again.

Blogger synergy said...

I'm with your husband on this one. If K was thinking about taking part in a study, which offered her a 50% chance of getting a placebo instead of lithium or trileptal, I would be very vocal in my opposition. I understand that they need the research data, but it wouldn't be something I could support. Too risky and too painful if it didn't go well.

When you initially wrote about the study, I didn't realize you faced the possibility of a placebo. I understood it as a study of your reaction to Seraquel. Now, having a better understanding, it sounds like a risk.

I know it's difficult to turn down the doctor, but I think you are making the right decision for you and your family.  

Blogger moodymicello said...
Dear B, Good decision on your part (and your husband who has to live with you haha) We really do have to consider what a joooy we can be. I am a little surprised that they would consider you when you don't seem altogether that stable but...... Anyway, let's just say I'll help any BPer with any info I have but I won't go cold turkey on my meds and set off the atomic bomb of devastation that can cause. Your decision is the right one for you to keep you safe. Dr. doesn't and can't ever know how it feels to be out of control. Take care. Michele  

Blogger Becky said...
I think you totally made the right decision. I could understand doing the study if you had never been on seroquel before, but coming off of a drug is so NOT worth it. Take care of yourself. There will always be some other way to help the BP writing on your blog! :)  

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