Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Sunday, May 24, 2009

The end of an era

I just realized something.  I'm about to make a BIG med change.  

Way back in 2002 when I was first diagnosed I participated in a clinical trial testing the efficacy of a 3-pronged approach to treatment (I think of rapid cyclers, although I don't remember).  They already knew the combination of lithium and Depakote was effective in people who didn't respond to one med, and since Lamictal at the time was the new drug of great hope, the study was determining if the 3 together was even better.

The study was rocky for me.  I was already on lithium, so first Depakote was added.  I don't remember what the criteria for adding the placebo/Lamictal but that wasn't done until maybe week 10 or 12.  Depakote didn't do a lot for me.  My dose was increased over and over but my blood levels didn't go up accordingly.  

Then I started the placebo/Lamictal and at first did well enough we all thought I was getting medication.  After a week or two it became quite obvious that I wasn't.  I was offered the chance to stop the blind part of the trial and get on real Lamictal ASAP (along with offers of hospitalization, dropping out of the study totally to get on other meds, and who knows what all) but I felt I was so close to the end that I didn't want to quit and not have my data count.  After so many months of free meds you start to feel pretty grateful to the drug company, especially if you have horrid insurance that covers meds at 80% and you are on hundreds of dollars worth of meds.  (I changed jobs immediately after the study to get group insurance).  Plus, I have a thing about following through on committments.  Sometimes to my own  serious consequences, as we all know.

Near the end of the study we re-visisted my Depakote dose and level.  For Depakote to work the level should be >50.  Mine, even on a relatively high dose, was 47.  (Over the next years we'd actually learn my level needed to be 120-125).   A new version of Depakote, Depakote ER, was proposed as a way to see if my liver could be tricked into not processing it so quickly.  This, combined with a hefty dose increase, allowed me to finally start feeling somewhat better (at least not suicidal) for the first time in 13 months.

For the last 7 years I've been on Depakote Er.  I've paid the higher rate for it each month, usually $30 per refill.  This has been frustrating while regular Depakote was generic and much cheaper (probably a $4 script lots of places).  This winter I was thrilled when ER went generic.

Over the last 6 months my Depakote dose has gone from 3000 mg/day to 1750 mg/day.  For a long time I've been breaking a few of the ER pills daily to make them immediate release, so that I wasn't so tired all the time.  In the last month I have been breaking all of them.  Since we already know that I don't process Depakote well my doctor already has told me that monitoring my blood level isn't very relevant during this weaning process.  We're watching how I feel, because we have extensive evidence my blood levels react oddly to this drug (I've been monitored extra-carefully trying to see how to adjust accordingly back during more desperate times.)  I feel great.

On Saturday I will see Dr. Brain.  And at that time I'll more than likely get a prescription for regular old Depakote.  Which is another sign that Depakote is no longer such a vital thing.  In fact, the end of depending on it may be approaching.  I don't know if I get to come off it; I have the impression she wants some in my bloodstream in case I would need a boost.  But I'm going to push for as far down as possible.  

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