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marta
04-15-2011, 04:08 AM
When you're a Weggie or someone dealing with Wegener's Granulomatosis good news days are like the pot of gold at the end of the rainbow, this is why I'm posting my good news day update.

I just got back from my rheumy visit in the city after my two RTX infusions. Things are definitely improving!!!! Woooo hoooo!!!

Inflamation markers are all within normal range. My liver function tests (all but one) are within normal range and the one that isn't is moving in the right direction and will be in the good zone in no time. The anemia is all but gone, everything on my lab results is looking pretty darn good. I get to taper my pred (my doc is pretty conservative - I like that) 1mg per month until I get to 10 then we'll do something different. I see her again in 3 months to start planning what we do in 6 months. Probably going to go on a maintenance drug - imuran or methotrexate. I'd prefer to see if I can be drug free, but only time will tell. My doc is so awesome - she really respects my opinion and lets me be an active participant in my healing process. I tried to get her to give me a number on how many WG patients she has treated so I could show off on here, but she didn't give me the goods - she just said "lots... lots and lots" she also said she's treated so many Weggies that she feels very comfortable with treating this disease, much moreso than treating Lupus.

I'm feeling better - I get the odd zap in my head but they are becoming fewer and fewer. I have enough energy to do some pretty physical work around the house (tiled a wall, and am redoing Hana's bedroom while she's with her grandparents in the city). I went skiing with Brian a couple days ago and pulled of 6,000 vertical feet in the fresh powder with some awesome mogul skiing.

This is one of the reasons I haven't been on the forum too much of late, I have enough energy to keep myself pretty busy so I've beein doing just that - keeping busy.

I just wanted to post this to say hi (I've had a few people from here contact me to see if everything is OK) and I'm doing great, and also to give the new members thrown into this crazy world hope that despite those first days/weeks when you can't even imagine yourself walking down the block, things get better, and although I haven't gotten back to where I was at the start, I am working hard at getting there some day.

Things would have been much more different without the support and wonderful people I've met on this forum.

Thanks to you all.... now write that book and we can publish something that'll help the newly diagnosed.

Off to build a queen size bed and figure out how to elevate it five feet off the ground. Ha ha. I'll let you know if it works - unless I get squished beneath it.

P.S. I do know that with this gig come ups and downs and right now I'm up. I know there will be many downs, but I'm totally into this last doctors visit and the current upswing.

DEE
04-15-2011, 04:48 AM
Great News Marta ,good to hear you are doing ok :hug3::hug2::hug1:

Sangye
04-15-2011, 04:52 AM
That is AWESOME news, Marta. I'm so happy for you! Brian's last post about Hana missing you on the slopes has haunted me. How wonderful that she has her mommy back. :w00t::thumbsup:

(BTW I was just about to contact you... was also worried that we hadn't heard from you lately)

Brooke
04-15-2011, 04:54 AM
Awesome news!!!! Yay for you!!!!!

NicShaf
04-15-2011, 05:02 AM
Great news, glad to hear everything is going well!

Geoff
04-15-2011, 05:07 AM
Great News Marta!!!

But aren't you overstepping the mark even with your confidence?



Off to build a queen size bed and figure out how to elevate it five feet off the ground.

Are you going to do this with the power of thought, levitation or smoke and mirrors? :laugh:

freakyschizogirl
04-15-2011, 05:11 AM
Nice one Marta! :thumbsup:

ArlaMo
04-15-2011, 05:35 AM
Woohoo for good news!!! So glad you are feeling so good, Marta!

Daggar
04-15-2011, 07:32 AM
Good to hear Marta!

You're lucky... our ski season has been extended!! Almost a foot of snow fell in and around Calgary last night with more expected on the weekend. If we could just find a way to keep it in the mountains....

I've been rebelling by taking a day off work every other week to head to Sunshine.... I wonder if I could write that off as "Therapy"???:wink1:

Miss having the little weggie with me though.... she's back to normal at school for the most part and I don't want to interfere with that right now (catch-up).

pberggren1
04-15-2011, 08:07 AM
Woot! Woot! That's awesome Marta1

How much pred are you on now?

I will be going on Imuran soon once done ctx and rtx.

Hopefully will hear if the rtx is approved by Monday.

Might not see you this summer. Money is very tight. And Mom wants to spend more time with her first two children.

pwc51
04-15-2011, 09:30 AM
That's great news Marta. As you have probably read elsewhere my two rtx infusions had a similar effect to yours. My bloods have gone to pretty much 'normal' in 3 weeks. I feel so much better too - nothing is worse than the two weekly cyclophosphamide infusions and the susequent side effects that we have been struggling with for the past 5 months. Not sure I have got too much energy back yet but hopefully that will come with time.

Saw my rheumy last week, he was almost jumping with joy! He had been talking to the rtx salesman who told him that sometimes rtx can take 3 months, and in some cases 6 months, before it takes effect!

I am self injecting mtx now and just started reducing the pred from 15mg.

elephant
04-15-2011, 09:49 AM
Great news Marta and pwc51!

Sangye
04-15-2011, 10:50 AM
Wonderful to hear, pwc51! :smile1:

gurinbasra
04-15-2011, 11:11 AM
Marta and pwc51 - great news on having success with Rtx. Just like Marta, I've been feeling pretty much normal these days and find that I haven't been checking the forum too often because I've been busy living my old life. I'm starting my pred decrease 1mg/mth and am at 8mg. Funny, this time round I don't seem to be having any side affects - not getting sick about 4-5 days after 1mg decrease - do I dare say the word remission!

Live it up!

vdub
04-15-2011, 02:19 PM
Good deal for both of you! I had blood tests today and I'm hoping to see my c-reactive go down. We'll see.....

Sangye
04-16-2011, 01:07 AM
Glad to hear you're doing so well, Gurinder. :thumbsup:

Good luck to you, vdub!

marta
04-18-2011, 02:42 AM
Great News Marta!!!

But aren't you overstepping the mark even with your confidence?

Are you going to do this with the power of thought, levitation or smoke and mirrors? :laugh:

Ha ha Geoff, apparently I was overstepping and the smoke and mirrors didn't work. I bought the wrong bed frame (turned out to not even be a bed frame - arrrghhh Ikea) so I just painted her room and culled the herd of toys and books. That in itself was epic.

Thanks to you all for your amazing support and cyber friendship. I dream a dream where we all meet one day and have a killer party.

LisaMarie
04-19-2011, 01:40 AM
congrat...be careful ...don t over do it and wake up the beast :w00t::w00t: