Liver involvement anyone?

[marta]

I'm baaaack...

Very nice to be home and catching up with all you fine folks. Thanks to you all for the nice wishes and kind words.

Things are improving and now that I'm back on cyclophosphamide I know that it'll be OK in no time. Oh, the irony. I was so stoked to get off it at the end of October and now I'm pushing to get on it, and quite excited about it too. I'm not on any antibiotics as the doc thinks now that it was the Dapsone that is elevating my liver enzymes. It's funny because I'm such a geek (I went to the ER and was talking to the docs there and showed them my 'uber geek spreadsheet' with ALL of my bloodwork results since June 14 - they had a good chuckle) when it comes to looking things up, but I never once thought to look up Dapsone. It apparently has a tendency to mess with the liver. It's also used to treat leprosy, which is great cuz at least my nose wont fall off.

We'll see what happens with the bloodwork in the next few days, and hopefully I can get onto something that will protect my fragile little lungs.

All the best to you all, and I hope this season of flu's and uncertainty and head pains, and joint pains and flares and chunks is soon gone and replaced with joy and laughter and giving and receiving and love and frolic.

[pberggren1]

I so hear you Marta about wanting to go back on the ctx. When I was flaring in late October and November of 2007 I knew I was flaring and wanted to get back on the ctx and pred to make me feel better again. Within less than a week of starting it again I was able to get out of the house and play pool and do other stuff. And then when I flared again in June of 2008 I just started back on the ctx and pred myself and let my Rheumy know. When she called a couple of days later she was a little upset and asked under whose authority did I start the ctx and pred. I said it is my authority and explained why and she agreed. I hope your liver enzymes stay normal now and your doc can find another antibiotic that will work like Bactrim and Dapsone. So are you back in Jasper now? You have an appointment in Edmonton with the Opthamologist on the 6th of Dec., right?

[pberggren1]

Hey Marta:

I still can't sleep so I am going over my notes for my doc appointment on Wednesday. I am writing down some notes about you as well. I will ask him about the Bactrim desensitization process and if there are any other prophylactic antibiotics out there to be used in this case when on ctx. I will also ask him about Dapsone and increasing liver enzymes. If I remember correctly your GGT and ALT were the ones that were spiking. I took a quick look at me2's link to sulfa desensitization and it looks fairly straight forward. I will also bug him about consulting on your case to see if he can do it or not. I know he would be willing it is just a matter of the rules in place between provinces. He said there is so much politics in practicing medicine it makes one scream. Anyway, if you have any more questions you want me to ask him just let me know. He always sets aside an hour with me so we have lots of time to go over things. I can't believe it is December already. Where has the year gone. In fact, the last few years have seemed to slip by so fast for me. It is like one day I am 22 and the next 34. You are learning this Wegs game very well. You will be a master player in no time. Not that I want anyone to have to play this game ever, but we all have to be our own best doctors and the Wegs specialists we see and even other Rheumys, Nephs, etc. that have a few Wegs patients also expect us to know Wegs and keep track of our symptoms in a daily journal and to keep researching and to stay on sites like this. My doc encourages me to be on this site often. I have never asked him if he goes on this site but I am sure he does not have the time. He works alot of hours right now but said to me last week that he is getting another Nephrologist in to help take the load off. I said I was glad because I was a little worried he was being over worked and would get sick. I told him I am selfish and he can not ever get sick and cant retire for at least 25 years. He laughed of course. I do admit I have slipped in the keeping a daily journal or diary area. For the last 3 or so years I have not kept one going. But amazingly I can remember when I started what med and when I finnished and switched to another and so on. But I know I should get in the habit of it again because like I said above the years go by so fast and it is easy to forget some stuff when they happened 10 or 20 years ago. Starting in January I will try and start a new journal.

[elephant]

Marta , so happy that your home and glad your on cyclo to knock this WG down. Rest easy Marta and love your spirit!
Phil, I am so sorry that your not sleeping. I know how frusterating that can be. Wishing you some ZZZZ's to come your way.

[Sangye]

Marta, I'm glad you're going back on the ctx-- whew!

I've done the same thing with a couple drugs-- hated having to start on them initially but begging for them later. Isn't it great how well we can adapt and change? Not everyone is as flexible as a Weggie.

[Psyborg]

Glad to see you are back at home and getting better. Hopefully the ctx will knock everything back into shape.

[marta]

Not everyone is as flexible as a Weggie.

Ha ha ha... except maybe those Chinese acrobats that make your mouth hang open and your eyes bulge out as you watch the stuff they do.

Thanks gang. It's awesome being back at home and having my snotty little monster spitting at me with delight (Hana, not Brian.) I know the ctx will bring it back together - it did the first time, and it'll do it again.

Phil, don't you be worried about me. Use up all your time with your doc for yourself - you're one seriously lucky dude (who incidentally does look 22 not 34) to have your doc set aside an hour for you. Keep him!!!! Use duct tape if you have to.
Hey, by the way, in tribute of YOU - Phil, I took a photo of my chunks the other day while in the city. I'm not showing anyone, but the thought of your chunks photo prompted me to do it. I'm laughing as I type this.

[Brooke]

Marta, glad you are back home with your family, sometimes that is the best medicine! and sorry you to hear you were sick, no fun!!!

[pberggren1]

Ha ha ha... except maybe those Chinese acrobats that make your mouth hang open and your eyes bulge out as you watch the stuff they do.

Thanks gang. It's awesome being back at home and having my snotty little monster spitting at me with delight (Hana, not Brian.) I know the ctx will bring it back together - it did the first time, and it'll do it again.

Phil, don't you be worried about me. Use up all your time with your doc for yourself - you're one seriously lucky dude (who incidentally does look 22 not 34) to have your doc set aside an hour for you. Keep him!!!! Use duct tape if you have to.
Hey, by the way, in tribute of YOU - Phil, I took a photo of my chunks the other day while in the city. I'm not showing anyone, but the thought of your chunks photo prompted me to do it. I'm laughing as I type this.

Please show me your chunks Chunky Monkey. Send them to me in an e-mail.