T-shirts and other Weggie goodies are available for purchase on-line

[marta]

Thanks Sangye. I was just talking to Brian and thinking about a comment Jack made in a thread a couple of weeks ago. He jokingly said how it's funny when doctors tell us Weggies what to do we take it more as a suggestion. Well I'm having that kind of moment right now. My doc, decreased the markers he's looking at on a new labwork requisition (doesn't have ESR on there anymore or urinalysis) and he's increased the amount of time between labwork appointments (from two weeks to once a month). I just decided that I will continue on with the old bloodwork req for at least a couple of more appointments - at least until I see that things are sticking with the methotraxate. I get to see my results too, so I'll keep an eye on them. I think this is an odd time to decrease surveilance - while we're switching drugs and the serious wean off pred.

What do you think? Am I crazy or am I paranoid?

[pberggren1]

You are absolutely right Marta. One has to stay highly vigilant.

[DEE]

Marta i was taken off cxt and put on cellcept which didnt agree .so had to wait a week until i could start Imuran that was after been on cxt for for 10 mths
so i know were you are coming from
ive been fine and think that my ache etc come more preds tappering
take care of you DEEx

[DEE]

ps i like the idea of seeing blood results
wg consult showed me what to look for ,as i have mine done at gp surgery and has on occcasion been useful as i ring his office if i see some thing im comcerned about
usually means drugs chsange but also save a trip into town just by been able to fax him and discuss what to do
im still having bloods done every two weeks

[marta]

Yeah, I think I'll keep it going as long as I can before I get called on it, and if I do then I'll call'em back... if you know what I mean. I didn't pay attention to the new lab requisition until I got home, and was a little disappointed when I saw it compared to my old one, so I'm sticking with my old one. I've also been seeing my rheumy once every two months and now he has changed that to three months. It could mean that I'm doing amazingly well, but I'm thinking that's not the case considering how I feel right now, so I'll have to keep on top of my own stuff I guess. I'm OK with that.

On a more fun topic, I've just put up three more shirts. Two roller coasters from H-E-double hockey sticks, and a Panda shirt - remember when we were talking about pandas being our mascot because of the dark circles around the eyes, well now they can be.

Have an awesome night you guys, I'm off to bed to read my book (The Girl Who Played With Fire) and the kids (Brian and Hana) are asleep so I get to polish of a few more pages.

[jola57]

Marta, hopefuly all will be right and you will not have any problems before getting onto mtx. Why were you not put on both for a transition month? My rheumy also stopped seeing me every month, now its actualy once a year, and my blood test is every month, but all the markers and urinalysis and esr etc is still on there. By the way this is for all Canadians. In BC we now have myehealth website where I can log on and see my lab results within a day. See if you have the same possibility.

[elephant]

Marta, if you go four days feeling unwell, call your Rheumy. You know your body best!

[pberggren1]

Marta, you are reading a book called The Girl Who Played With Fire? I am The Man Who Is Fire.
I don't remember playing with any girls.

[marta]

Phil, I just read your post while eating a piece of watermelon and it just about came out my nose. You're too funny. I'm still laughing.

Elephant, thanks, it's quite hard getting a hold of my rheumy. It's a little irritating actually, and my GP who's an hour away is also hard to get in to see. I was thinking of getting one of the docs in our town - who you can get in to see easily to be my 'go to guy' when I have an emergency. I am pretty well the one taking care of my 'get healthy' program, so all I need is someone to bounce ideas off and have access to the medical system - i.e. blood tests, and other things. I just upped my pred to 20mg today after quite a few days of a perpetual headache and stuffed sinuses. Today I had some pinkishness in my sinus excretion, so I decided to up the pred, and within a couple of hours of taking the higher pred dose, my headache is gone, my sinuses are unstuffed, my ears don't hurt - it really is a miracle drug, as much as I hate it. My rheumy also told me that if I happen to have a cold or flu I can up the pred for a couple of days as this is what normally happens when our adrenals are working. I'm gonna hold at 20 for two days and then go back down to 12.5 and see what happens.

I'm getting braver.

I just saw that someone bought the panda shirt... I wanna see how that one looks on, so whoever it is you gotta post a picture.

[elephant]

Sounds like your WG is playing games with your Marta, keep a close on on your sinuses....they are a great indicator for active WG.