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Freddie Graham
04-15-2009, 05:58 AM
Hi folks
Never knew this site existed but glad to find it.
First diagnosed with WG in 2001- relapse 2003 and at the moment its back again - that is how i found the site trawling around trying to find a support group. WG back with a vengance in eyes sinus and nose
Does this thing never give up ?
Hi again to all and good to find a site that knows what it is all about and will listen

Freddie
Northern Ireland

Sangye
04-15-2009, 07:12 AM
Does this thing never give up ?


Sometimes I think if Wegs could talk it'd be saying the same thing about us.

Glad you're here, Freddie. Good times, bad times, we share them all. :)

jola57
04-15-2009, 04:38 PM
Welcome Freddie. Its like a whack a mole, you whack one just to have another pop up ;).

crackers
04-15-2009, 08:03 PM
hi freddie and welcome to our motley crew(now there's a good name for a band).sorry to here about your flare up but if you read the posts on here you'll find it's not uncommon.that's WG for you.just when you're sitting in the sun with a nice cool drink along come the clouds to rain all over you.
john.

coffeelover
04-16-2009, 12:34 AM
Welcome Freddie! So sorry to hear about your relapse. I am in early diagnosis stage and hoping to go in remission soon. I hate to hear about relapses, but I know it is common.

Lisa coffeelover

Doug
04-16-2009, 01:28 AM
I don't worry about things, but I try not to be blase about relapses. I like to think I'll be clever enough the second time around to realize in the early stages that I'm in relapse and get to the doctor. Though I still see my primary care doctor on a six-month schedule, have the usual blood and urine tests done each time, with an annual cANCA test unless I have concerns and ask for one earlier, I worry that I'll be stupid like the first episode, wandering around for 10 months in full-blown WG before I seek medical help. That was a sentence, eh!? For those of you who've had relapses, what advice do you have for those of us who have not? I know it's going to be common sense, but I'm so pigheaded sometimes, it's nice to have someone else say it.

Freddie Graham
04-16-2009, 05:27 AM
Thanks everybody for your welcome,
My present relapse occured at least 6 months ago but as my blood test and anca were showing negative nothing was done untill december although i felt awful.
A specialist in the hospital then discovered that WG could occur in the sinus /eye area without showing up in tests ( I ask you ) So as far as relapses is concerned - go with how you are as well as the tests - you body will sure tell you .
Its the boredom / depression sorta stuff that is getting me at the moment thats why i joined the site

Doug
04-16-2009, 09:16 AM
Sounds kind of like something Jack wrote a few days ago: in essence, let your body and how you feel be the guide, then back it up with tests.

coffeelover
04-17-2009, 04:31 AM
Its the boredom / depression sorta stuff that is getting me at the moment thats why i joined the site

I think this site is fantastic for the depression/boredom symptoms. We are here for support and laughs as needed.

LIsa coffeelover

Doug
04-17-2009, 04:56 AM
I've never had a relapse, so it is useful to have your comments, the comments of others who haven't yet had remission or remission confirmed to remind me just how the active WG affects you. It's familiar, yet so far removed, now, from my day-to-day experience, that I feel like an observer, not a Weggie! The YouTube videos I've been doing, in part,
are to help me keep that experience alive in my mind. (I've made up my mind not to use smiley faces. They are addictive, and I am a user! Haw!)

JennyT
04-17-2009, 05:38 AM
Hi everybody,
Is any of you on aranesp. any side affects?

Doug
04-17-2009, 07:23 AM
Jenny- I copied a long list from one internet site and sent it to you. I'd suggest you check other sites for comparison. Anyone else who is interested in this drug, which is used for anaemia by stimulating blood cell production, should check the internet, too. Anyone who has used this drug, in the meantime, please tell us what your experience was. As with many drugs, the list of potential side effects was alarming and long, though most people never experience any of them!