Finally!!!

[Daggar]

Received "good" news about Holly's elevated liver enzymes. :thumbsup:

All tests for infection/viral causes came back negative and her lab work today show that everything has almost returned to normal. They had us stop the sulfatrim/cotrimoxazole for 2 weeks and tested her LF over that period.

The question now is whether it was an adverse reaction to this drug or was it due to the large dose of iv methylpred on Monday? They want to rule out that it was some form of inflammation that caused the spike so we're going back to a regular dose of sulfatrim/cotrimoxazole for the weekend and retest next Thursday. If they go up again we have to lose the sulfatrim from the arsenal.... if it doesn't we need to find out what the inflammation was from.
Her creatinine levels have dropped to 92 - the lowest number we've seen since being tested..... :hug3:

Is Marta the only one that had liver involvement with WG?

[pberggren1]

Awesome news. I am sure there are many others on here that have had liver involvement.

[Sangye]

Great news, Daggar. I don't recall anyone else with Wegs liver involvement. Many have liver issues secondary to drugs though.

[jeriorleans]

so very glad that Holly is doing better. A.J. has been granted a "Make a Wish". I always thought that the organization was for children that had fatal illnesses, however it is actually for children with "life threatening illnesses". I'm not sure if Canada has "Make A Wish" but if they do you should have her doctor recommend her to it. Its a time to get away from all of the doctor visits and stress "yours and hers" and for the family to have a good time together. A.J. wished for a trip to Normandy but due to the international problems Make a Wish is not approving out of country visits. His second wish was PEarl Harbor, HI which I think he will love. HE is a history buff!

[Daggar]

Thanks Jeri.... that's awesome!! Hope AJ has a blast! How's he doing -- lab results okay?

Sangaye/Phil -- I wonder why liver wouldn't be effected in the same way as kidney/lungs/etc. -- could it have something to do with the size of the vessels?

[pberggren1]

Thanks Jeri.... that's awesome!! Hope AJ has a blast! How's he doing -- lab results okay?

Sangaye/Phil -- I wonder why liver wouldn't be effected in the same way as kidney/lungs/etc. -- could it have something to do with the size of the vessels?

I think that is good question for the Wegs docs. What you say does make sense though.

[Sangye]

I don't think that's the explanation-- Wegs affects small and medium-sized blood vessels and the liver has both. They don't know why Wegs loves the lungs, kidneys and sinuses so much. Like many diseases, it just has a distinctive way it affects the body.

[marta]

This is awesome news Daggar. It's great that the docs are all over it too. When I was having my liver issues, my doc was my old rheumy that made me feel as an aside in his practice. He only seemed interested to find out what's going on when I was actually there in the office with him, and his efforts extended as far as looking things up on the internet during our alloted half hour appointment. I have an appointment with my awesome new doc in early April and will ask her about the liver thing. Incidentally, she's working on starting a Vasculitis Centre in Edmonton. How cool is that?

Big hugs to Holly.

[drz]

This is awesome news Daggar. It's great that the docs are all over it too. When I was having my liver issues, my doc was my old rheumy that made me feel as an aside in his practice. He only seemed interested to find out what's going on when I was actually there in the office with him, and his efforts extended as far as looking things up on the internet during our alloted half hour appointment. I have an appointment with my awesome new doc in early April and will ask her about the liver thing. Incidentally, she's working on starting a Vasculitis Centre in Edmonton. How cool is that?

Big hugs to Holly.

Having a Vasculitis Center nearby sounds like a great deal. Is there a center now somewhere in Canada?

[pberggren1]

There is one in Toronto at Mount Sinai Hospital.

[Daggar]

The Mount Sinai Hospital is where the genetic study for WG is being conducted. It'd be great to have a dedicated Vasculitis Centre in Western Canada hopefully she can pull it off with the current political climate.

I searched high and low for liver involvement in WG patients caused by the disease, not the treatment, and I came across one incident with a 58 year old male. They were treating him like he had been discovered on Mars! From what I'm reading it is "extremely" rare that liver involvement comes directly from WG....