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

Saturday, March 01, 2014

Things you don't want to hear

I saw Dr. Brain today.  She did not say I can't go back to lithium.  However she is guiding me away from it and wants to try other drugs first. Since they are rather extreme options she REALLY doesn't want me to go back.  She says it is better to keep trying to find something to replace it if we can.  I understand and agree; I'd need to stop it eventually and since we know it's very hard it might as well be now when I have a month under my belt.  But it was one of those conversations you have and then later start thinking "WHAT???".

The ideal would be to put me on Lamictal.  However my history of having had the rash severely and in the location where it was means that I can't go near it again.

We went the conservative route and bumped my Seroquel up even further.  I'm breaking one pill to make it immediate release so that hopefully that makes me sleep.  Tonight I took half the broken pill; tomorrow I'll increase to the whole one if tonight doesn't work.  If that fails the plan was to re-try Latuda.  The problem is that I can't afford Latuda and Emsam both.  And Emsam is more vital.  She doesn't know about that problem yet.

This is where things got a little scary and very clear on where I am right now.  We talked seriously about Clozaril briefly.  Clozaril is a very effective drug that requires very serious monitoring because it can wipe out your white blood cells and kill you.  So for a long time you have blood drawn weekly, then every other week, then monthly.  She decided that this isn't ideal for me right now.  We then discussed every atypical and there aren't any left except one that interacts with Seroquel.  That leaves some older anti-psychotics.  Not truly terrible ones like Haldol or Thorazine, ones that are rarely used and I hadn't heard of them (maybe one, I think one was Prolixin and she gave the generic name but I'm not sure and I don't think that was the first choice).  But those drugs aren't pulled out lightly.

New antipsychotics are expected this year.  Undoubtedly my insurance won't cover them easily.  I chose a cheap Med D policy and couldn't figure out what made it cheap. The answer is that it doesn't have a broad formulary and since it is absolutely impossible to anticipate what meds I might go on during a given year I didn't pick up on that.  We'll see how it goes this year and maybe next year I'll discuss potential meds with her before I choose a plan and try to guess ahead a bit.  I think her hope is to get me on one of them.  Unless we can get patient assistance I'm not sure that will happen.

There are many reasons the old ones are bad.  They can cause extrapyramidal symptoms which I have a history of on meds that rarely cause that.  So that will have to monitored.  They can cause permanent problems called tardive dyskinesia (and I'm leaving you to look things up because I'm tired).  They also are more likely to cause weight gain when I'm trying hard to get some of the weight the changes in the last year have caused off and I really am opposed to gaining much more weight.  They are more sedating and require dosing during the day which is not easy for me to manage. 

So I pray the Seroquel works and if it doesn't I'll have a whole new adventure I guess.

I miss lithium.

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