Thursday, March 20, 2014

Preliminary Biopsy Result !!

Dr. just called.  Pathology Lab says that it's a drug-induced liver injury.

He was in a hurry, so that's all I got for now.  

Left a message for his assistant, asking for a copy of their report asap.

I may need to send everything to a specialist in liver pathology, and see how well we CAN pin down WHICH drug. 

Immunology (I go there on 4/4) should be able to test to see what drug it was, and what drugs I might NOW be reactive to.  This isn't totally safe, but may be worth the known risks.  Have to do it.  Safer to do "patch testing" than to roll the dice by taking the actual meds.

What I've read says that ... particularly since this is NOT my first drug reaction ... my body is now "sensitized" to any number of OTHER drugs -- of ANY class (not just ... whatever it was that got me this time OR last time).

And subsequent reactions are nearly always MUCH quicker and MUCH more severe.

Meaning: can't take/treat anything until we know more.

My bet was/is Anticonvulsant Hypersensitivity Syndrome:

  http://www.medsafe.govt.nz/profs/puarticles/6.htm

Which ... since it's not my first time with a serious adverse reaction to THIS class of drug ... could, literally, have killed me.

I told the Pain Clinic that I was allergic to Neurontin (another anticonvulsant), and that I believed I HAD Anticonvulsant Hypersensitivity Syndrome.  They assured me that -- if we started off at a very low dosage, and pushed it up very slowly -- I'd be fine.  They prescribed it, off-label, for treatment of neuropathic eye pain.

So ... I'll meet with Immunology, AND meet with the Mitochondrial folks, in mid-May.

I now have a LOT more information than I did this morning, but ... I still need a lot more.

And a lot more sleep ;-)

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