Liver involvement anyone?

[pberggren1]

Phil don't forget the crusties!

Oh ya. At least I have pics of those.

[Psyborg]

Now I went out and read some articles about liver involvment. It has me wondering if my liver issues might have been the first presentation of Wegeners. I developed liver issues with basically no risk factors. They finally blamed it on my weight as I was seriously overweight at the time, but the vast majority of overweight people get only fatty liver, but not cirrhosis. Of course I never exhibited any symtoms of Wegeners until well later so I might be just being suspicious without any basis

[Sangye]

That's very odd, Psyborg. Did you read anywhere that Wegs involvement would lead to cirrhosis?

[Psyborg]

This article refers to someone with cirrhosis apparently brought on by Wegs. Though the medications we take (MTX primarily) could cause it I would think if you have some vulnerability.

Incomplete septal cirrhosis associated with Wegene... [Liver. 2002] - PubMed result

Not sure how conclusive that is of course.

[drz]

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

Only us lucky ones!

[marta]

So here's my continuing Rubics Cube Liver and Wegs puzzle. I was told to sto the cyclo again last Friday as my ggt was 352 and alt 152. The day after I stopped the started to drop, but I think it's because the cyclo was just starting to kick in (I had been taking it for 8 days). So I just saw the rheumy yesterday and he's concerned about my liver (I appreciate that) and thinks that maybe the problem might be the dapsone (as I can't take bactrim) so now I'm off the dapsone too. Slightly unnearving to be mid flare an only taking 40mg of pred a day.

He's trying to eliminate variables, but I don't know that we're going about it the right way. I'm gonna give it a few days and then make some demands. He's going to talk to an infectious disease doc today to see if there are alternatives to dapsone and bactrim to keep my lungs safe, but he did call me "strange case"....he has no idea how strange I really am.

Oh and I wore my Weggie on the outside/inside shirt to the visit and am wearing it right now as I type this at the hospital ER waiting room (waiting to get my puffy, sore,weepy, blurry eye checked out). Wooo hooo Wegener's rocks!

[Sangye]

Marta, my case has been like that-- lots of paradoxical stuff, lots of rare stuff. It may be that they have to use rtx instead of ctx because of your liver.

A member once posted a link that explained how to undo a Bactrim allergy. (It was a medical process, not a holistic one.) I think it was before you joined. He said it cleared his up and he can safely take Bactrim. I don't remember who it was and have searched for the thread to no avail. Does anyone else remember?

[Jack]

It was me2. Post 26 in this thread - http://www.wegeners-granulomatosis.c...elp-flu-3.html

[me2]

It was me2. Ask and ye shall recieve. Here is the link:
Sulfa Desensitization

It has the stats that I remembered way back when I did the desensitization. Basically it works for 80% of people. Pretty good odds. You take teeny , tiny doses in liquid form and work your way up to theraputic dose- almost a couple a weeks.
It worked for me. This was many years ago and I can still take bactrim. Previously it caused an allergic rash.
I have been through wierd like you wouldn't believe -except you are all WG so you would believe. Currently my biggest problem is tongue and throat pain. My docs just shrug and don't take it too seriously. I guess if you have only had normal throat and tongue pain it doesn't seem like a big deal.

[me2]

Doh' Jack is just too fast for me.