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Thread: Liver involvement anyone?

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    Default Liver involvement anyone?

    Just wondering if any of you out there have had issues with your livers while having active WG. Mine was quite affected at time of diagnosis and also just now with this last flare.

    I know that it isn't textbook (but what really is with WG?) but I think that my liver just happens to get knocked out by Wegs, and am curious if anyone else has had similar issues.

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    Not directly, but I had pre-existing cirrhosis that I'm dealing with. To be honest I've not noticed any interaction between that and the WG, unlees it caused it in the first place. Biggest problem is it places a lot of limits on the treatment from what I can see so far. Honestly you are the first to mention a correlation that I've seen.

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    Marta, I haven't heard of Wegs affecting the liver, but you never know.

    I actually think the correlation is the converse-- that maybe your Wegs was caused by a toxin which would affect the liver. And now, either that same toxin or another one has stressed your liver and caused the Wegs to flare. I don't know if I'm making sense.

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    Marta ,my doc and i are keeping an eye on my liver fuction test results at the moment as some are particulary high
    both think its drugs related as since ive come off cxt they are slightly lower
    Seeing wg consult this pm and is on my list to discuss new results i got yesterday , as i still getting pain in right side and lower back
    he has suggested a liver biopsy if i want but thinks it will be worth looking to see if drugs change makes any different
    will let you know what he says when i get back

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    Thanks guys. Sangye, you've got the mice running the wheel again... as usual. You're totally making sense. Now just to find the connection.

    Psyborg, have you found you have to use different meds because of that? If so, may I ask what they are?

    Dee, they wanted me to get off the cytox because of that, and when I first got diagnosed I recall a lot of conversation about my liver by the "dream team" over my bed, but the enzymes went down when I started treatment, and they seem to be going down again since I started cytox last Thursday. It's odd. The rheumy, yup that one, is worried that it might be something else, but I will continue to think that it has to do with WG unless proven otherwise.

    I see him next week, so we'll talk about next steps. I guess.

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    Well that trend in your liver enzymes does seem to indicate that it's Wegs. I did some quick research online and saw that Wegs can affect the liver but is "exceedingly rare." I have an exceedingly rare complication, so I kind of chuckle when I see that phrase. I suggest they check your liver-- ultrasound, etc.... As with any other organ, damage to the liver can proceed silently and become life-threatening.

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    If it is "exceedingly rare" then you are bound to have it! That is my experience.
    Jack

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    Quote Originally Posted by marta View Post
    Psyborg, have you found you have to use different meds because of that? If so, may I ask what they are?
    Not sure yet, the doctor wanted a copy of my last biopsy where they diagnosed cirrhosis. I had them send that yesterday, I think that rather than MTX I'm going to end up taking Imuran. Not 100% sure yet.

    I am kind of odd in that my enzymes were never more than slightly elevated for years, but still ended up with severe liver damage. Typically people that develop cirrhosis have extremely elevated enzymes. So it's something of a mystery how this happened...I seem to have all the mysterious medical maladies, but I seem to come through them better than I should so I'm not going to complain

    I will let you know what they end up giving me, assuming they don't give me MTX in the end.

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    I collect rare things: WG, M. Abscessus, what next?

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    Phil don't forget the crusties!

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