New here from Kentucky

[marta]

Hey sadpixie,

I too have the same liver issues. LFT's were sky high when I just had my flare in October/early November (GGT was at over 350, ALT was 150+) and this is the reason they kept taking me off the cytoxin. I also had elevated liver enzymes when I first got diagnosed (now that you mentioned it in your post, I remember also being on a whole swack of antibiotics before diagnosis trying to beat down the seemingly infected ears I had). I don't drink, do drugs, have hepititis and was 142lbs before getting sick (I too had some pregnancy chub I couldn't get rid of - was about 132lbs before havnig Hana four years ago) but I can't see that throwing off my liver. My scans all look normal too. I've been under the impression that although 'exceedingly rare' that in my case my liver might be getting involved when the disease is active. I've been off the dapsone for a few weeks now, and now that the cytoxin is doing it's thing and things seem to have stabalized ever so slightly and my liver enzymes are going down (on Wednesday ALT was 57 and GGT was 174) I talked my doc into trying out the dapsone again and see if it does anything. This time our experiment is more controlled and we're not removing and adding cytox to the mix (which takes about a week to kick in and a week to leave your system - it was a very flawed experiment a few weeks ago). So I will report any findings within a week. I'll go in for bloodwork on Monday and see what happens after three days on dapsone.

Hope things stabalize for you. uggghhhh, what a crazy Rubic's Cube this goofy disease is.

Incidentally, I had no issues with my liver throughout the summer when I was taking both cytox (cyclophosphamide) and dapsone. Things were normal and steady. Only when the thing kicks into high gear.

[sadpixie]

Bah got a call from rheumy this evening saying that my urinalysis showed a small amount of blood. Creatinine was still normal, I am to go in Monday morning for more testing. I hate waiting over the weekend.

[Jack]

I very often have a trace of blood in my urine, not enough to see, but it shows on the tests. This is very common and almost certainly nothing to worry about. Just needs further checks to make absolutely sure.

Don't let it spoil your weekend!

[sadpixie]

Thank you, with just being diagnosed and learning about the disease my mind is still a bit in panic mode. I will definitely try not to let it ruin my weekend!

[Sangye]

Even though I have no kidney involvement I often have trace blood, too. It's not that uncommon for people in general and is nothing to worry about. I'm not sure if yours was "trace" or a bit more, but I agree with Jack-- don't worry about it and just get it rechecked on Monday.

[jola57]

sadpixie, do not worry it seems to be quite normal to have a "trace" blood once in a while.

[sadpixie]

Rechecked and everything was ok. Ready to start treatment next week!

[Jack]

Another crisis avoided!