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SueZ
11-15-2008, 11:26 AM
I'm still figuring out Facebook ... not easy for a 51 yr. old prednisone addled brain, but I'm grateful for forums such as this where individuals with WG can "meet" each other. I correspond regularly with some individuals (and not regularly enough with others)whom I've met on the WGdiscussion list as well as Myspace. I have yet to meet another "weggie" in person.

I was diagnosed with WG in November of 2003. My 5 year anniversary is coming up next week!! Maybe I should crack open a bottle of Champagne ... or maybe not. :( My 5 year anniversary with Methotrexate is also next week. :rolleyes:

I've never gone into remission although I've felt better at some times than others. My most recent flare was in June 2007. My areas of involvement are eyes, ears, sinuses, trachea, joints, lungs minimally, no kidney involvement thus far.

I live in NJ, am married with 2 adult sons still living at home (that's a good thing to me!) and I work full time as an occupational therapist in the school system. Working with WG should be a thread of it's own ... it may be, I haven't looked around the site much yet.

I'm looking forward to getting to know others who are living with this challenging condition.

Feel free to look me up on myspace:

MySpace.com - www.myspace.com/125662737 (http://www.myspace.com/lambiez)

Jack
11-15-2008, 09:39 PM
Hi SueZ,
Sorry to hear that you are not on top of your condition yet with no remission. I was like this for many years with constant flare ups until I switched to Myfortic and Prednisolone (plus a whole host of other stuff). Perhaps you should discuss a change of treatment with your specialist? Different things seem to work for different people.

SueZ
11-16-2008, 02:05 AM
Thanks for the input Jack. We've thrown around few ideas and changing meds isn't out of the question for the future. My last flare occurred when I was off of prednisone but still on 20 mg Mtx. If low dose pred keeps me quiet, we may stay with that. I'm not critically ill, my lung is not growing new nodules and current ones aren't growing any larger. We're just taking it day by day right now. My PR-3 has gotten lower but has never been negative, even when I feel great...well, it's been a while since I felt great ... My dr. said that I'm simmering ... never really completely well, never really critically ill. It's not perfect, but it could be so much worse.

Jack
11-16-2008, 02:31 AM
I think that Prednisolone is one of the key drugs in controlling Wegener's. My consultant runs a Vasculitis research group and has told me never to come off it, even if some other specialist suggests that I should. I take 10 mg / day, but over the years (more than 20 now), it has caused quite a lot of damaging side effects. However, it is probably better than the alternative.

SueZ
11-16-2008, 03:25 AM
Yes, my dr. did state that I may never come off of pred this time around. I'm on 5 mg. currently and if this does the trick then I guess it's better than the alternative. True there are multiple side effects to the pred, but I've escaped most of them thus far...I hope that holds true for a while.

Were you diagnosed with WG 20 yrs ago??

Jack
11-16-2008, 05:01 AM
It is around 22 years now and not too long after they worked out how to treat it, so I have to consider myself lucky. Unfortunately, I was already suffering from kidney failure, lung damage and various other ailments. My hospital has been great and with the help of a transplant and lots of medication they have kept me going. I've only recently had to give up work and have a wife and two wonderful daughters. :)

SueZ
11-16-2008, 06:45 AM
It's encouraging to hear of someone living and dealing with WG long term. I was blessed with an early diagnosis, mainly due to the love and concern of coworkers (I work in a school) and the fact that the principal's husband was a rheumatologist. He knew me and knew that if I said something was wrong ... it was wrong! He succeeded in making a dx where others failed. I will be eternally grateful for that dx ... it saved me a lot of more serious damage.

andrew
11-16-2008, 07:47 AM
I'm still figuring out Facebook
Hehe...me too and I'm a spritely 40yo :D


I correspond regularly with some individuals (and not regularly enough with others)whom I've met on the WGdiscussion list as well as Myspace. I have yet to meet another "weggie" in person.

I have got to know many people through the WGDiscussion list and also correspond with a few others. I too have never met anyone else with the WG but hope to one day!


I've never gone into remission although I've felt better at some times than others.

Ditto. I'm still waiting on remission but I don't let it slow me down. I hear you about feeling better some times than others. Some days I feel like I've been hit by a truck and others...well...the truck would just bounce off me :D


Working with WG should be a thread of it's own ... it may be, I haven't looked around the site much yet.

Sounds like a good idea. I see the question asked a lot in the WGDiscussion list.

Welcome to the forum, it's great to have you here and I look forward to seeing your post count go waaaaay up ;)