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The thoughts, opinions, happenings, and just plain ramblings of a seemingly boring person.

Illness Update: Misdiagnosis(?)

I thought i'd post an update for everyone who is interested on the current status of my health condition. A little background for those who are unaware can be found here and here.

A fair bit has happened since then, and it is quite positive news.

The immunosuppressive steroid drugs that I was put on to treat the colitis following my hospital admissions unexpectedly also had a marked effect on improving my liver function. This was quite unexpected, as PSC (the condition that they thought I had) does not respond to any type of drugs.

Unfortunately, long term use of this steroid is not an option for someone my age, but I have been put on another type of immunosuppressive drug normally reserved for leukemia patients.

So what the doctors think I have now is an even rarer condition than PSC, and has only been recently recognised in the past 10 years or so. They think I have autoimmune pancreatitis and associated IgG4 cholangitis. There's not much to read about online for the latter (which is what they think is affecting my liver), but the good news is that unlike PSC, it is responsive to drugs.

My recent blood tests have shown a great improvement in my liver function, even to the point where some of the indicators have dropped within the normal range. I'm also currently on a restrictive diet (which is not much fun at the moment) to eliminate any foods that might promote any even minor allergic/immune response.

All in all, things are starting to look brighter. Another MRI scan has shown a significant amount of bile filling up my gall-bladder, and now that my liver function is improving, the talk of transplant seems to have gone away for the time being.

I'm also starting to feel better, although I'm still very weak, I am getting some of my strength and energy back, and God-willing i should be able to go back to full-time work within the next few weeks. I'm still the lightest i've been since i finished high school: i'm about 13kg less man than I was at the start of the year. I'm having to constantly pull up my pants as they all now are very loose on me, but i'm not wanting to go out and buy new clothes just yet though.

Thanks everyone for all your continued thoughts and well-wishes, your thoughts and prayers are still very much appreciated.

Edit: Unfortunately the optimism in this entry was a bit misplaced, see this entry for a more recent update.

6 thoughts on “Illness Update: Misdiagnosis(?)

  1. lol at the pants falling down ..... old grey mare she aint what she used to be, aint what she used to be, aint what she used to be...

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