Wednesday, November 24, 2010

The puzzle continues

I've been off for a while.

I'm getting stronger now, but there are issues that are making the docs go 'hmmm'. My rheumy called me a 'strange case' yesterday - he has no idea  how strange I really am.

So now, just weeks after being in the hospital with a flare, I am officially on nothing more than 40mg of pred. This does not a Wegener's treatment make. It does make for one giant round face, big rounded shoulders and a belly that made a lady Buddha rub me and say congratulations last week.

The mystery? My liver enzymes keep going up and up. The initial thought by the docs is that maybe it's the cyclophosphamide that's making them rise. So stop the chemo. The day I stopped though I had been taking the chemo for just over a week (which is how long it takes for it to start doing it's magic) and the next day they started to drop. So are they dropping because I stopped for one day or because the chemo just started to work and is making things better????

Possibility #2. I am taking Dapsone (an antibiotic to help me eliminate the threat of a deadly lung bacteria that likes to hit immunosuppressed chemo junkies like myself). Normally I would be taking Bactrim, but am allergic to it, so Dapsone it is. Apparently Dapsone is known to mess with liver with a significant percentage of it's users. So STOP the Dapsone and see if the liver gets better. On a side note, it's funny that I never actually looked into Dapsone (I'm a bit of a geek and read all the info on all the drugs I'm taking, for some bizarre reason, I never got curious about Dapsone - apparently used to treat Leprosy -  hmmmmmm)

So I understand the experiment we're attempting, but I don't think we're controlling the variables well enough to make any significant conclusions, and in the meantime we're not treating the disease.

I'm giving this experiment one week, as I know that things can take a turn for the worse in no time, and then it's a total pain to try and reel it in, then I'm going to need some concrete plan as to what we do to get this bitch kitty under control.

My theory? My theory is that although 'exceedingly rare' there is a possibility to have liver involvement with Wegener's, and well, I'm exceedingly rare, that's why Brian married me. My liver enzymes were high before diagnosis (before dapsone, before cyclophosphamide) once treatment started liver enzymes went down. Now I  had a flare and poof, liver enzymes up. I think that when I'm active Wegs (as opposed to active Marta) I have liver issues. But better safe than sorry with the liver I guess. I can get a liver transplant, but being exceedingly rare, I also have (A-) blood type, so a donor would be hard to find indeed.

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