View Full Version : New member....HELLO TO ALL....

10-01-2009, 01:22 PM
Thanks for allowing me to join. My daughter Tracey is 29 years old and has had this illness for 5 years.

Tonight she was admitted to hospital and has again started treatment of corticosteroids and (Cytoxan), azathioprine (Imuran) or methotrexate (Rheumatrex),

Her kidney function tonight was at 50% and we are hoping that her kidneys will be able to withstand the high dose of stereriods.

This is her third outbreak in the 5 years and the most serious. She has been in denial for the past three weeks until she was so weak that she was unable to walk.

Her GP kept saying it was the flu, then pnemonia and then a high fever from a bladder infection.

I should also tell you that in 2007 she was able to deliver a healthy baby boy when she was told that she would NEVER be able to have children. He is the joy of our life (I am the Granddad and Tracey is my daughter)

My wife and I are so worried. We have been after her to see a doctor sooner but what can you do when they are this age. I hope this was a wake up call for her.

I will keep you all informed.


10-01-2009, 01:32 PM
Hi Mike,
Welcome to the group! Well, many of us older Weggies (I'm 45) still do the denial thing, too. It's beyond awful to think you might have to start all over with the drugs--especially the steroids. It's impossible to describe how bad they make you feel. And truth be told, it can be very difficult to tell if it's a flare or something else.

Even my Wegs specialist thought I had repeated pneumonia this spring, or at least pneumonia that was resistant to the antibiotics we used. It turned out to be a flare.

I do hope Tracey has a Wegs specialist and not just a regular rheumy treating her. Where are you located?

10-01-2009, 10:46 PM

We are located in Southern Ontario about 60 miles west of Toronto.
Traceys starts her treatment this morning. Her kidney function last night was at 50% and they are hoping that the kidneys will be able to take the Prednisone. If not, she will moved to Hamilton where the area Wegener's experts are located. Her local doctor is head of the local area Renal Department and has taken over from her GP, who to be honest, let this one slip past him. (even though he knew her case history)

Thanks for the support to all.

The good thing is that we have public universal health coverage in Canada. It is very good, free, quick and we are not at the mercy of insurance companies. Traceys doctors call the shots, not some individual working for a profit making company.


10-02-2009, 12:43 AM
I hear ya on the insurance stuff. Believe me, I hear ya..... :cool:

Cindy M
10-02-2009, 05:36 PM
Hello Mike,

There is a great group of people here to help and encourage you. I wish your daughter well. I also live in Canada and really appreciate the health coverage we have. I have tried a few different drugs to try and go into remission. My family Dr had not even heard of WG before, it wasn't until I went to emergency to a hospital that deals with ENT. It was then that the ENT specialist had actually diagnosed me before I even had any biopsy done. I have had alot of luck with the knowledge of the Dr's I have been seeing.

10-02-2009, 11:23 PM
Thanks Cindy. We complain about our Universal Health Care sometimes, but I would be in the poor house we didn't have it. I least we can't get dropped and we don't have any upper limit or deductable.

Tracey was a little better last night. She was on her 2nd day of Prednisone and today goes for the plasmsharessis for 7 treatments 1 every over day.