Wegener's Granulomatosis Member Introductions

My mother is 78 years old and was diagnosed with Wegener’s 2 years ago. She had all of the classis symptoms except for the kidney failure. She is also unusual because of the age of her onset. She went through the course of Cytoxin but was unable to switch the Sulfa drugs due to past drug allergy.
She was symptom free for 5 months but has relapsed quickly in the last month. She is to restart the Cytoxin at the maximum dose today.
I cannot find any info concerning what happens when someone relapses. How does restarting Cytoxin affect one’s general health? Is methotrexate an option? What can I expect for my mother and the future?
Because of her age and history I have just moved in to live with her. She has always lived a full and active life and will try to look forward to getting her energy back soon.
Any words you have would be great. Thanks.

I want to know more about wegeners.

doctor said I might have it.

My wife has been diagnosed with Wegeners and I wanted to know a little more about it.

I have had Wegners since 1998. Its mostly in my upper respitory area and feels like I have a head cold alot. It has made me deaf in my right ear and its nerve damage so theres nothing that can be done. Im 32 and a mother of 2 children. 10 and 2. I live in Montana and have a hard time finding anyone to talk to although last year I ran across a gal that was getting Chemo at the same time I was that has Wegners too. We have become close and what a difference it makes to have someone that can relate to u. I hope to find more people out there that would like to talk about what they have gone through too. I look forward to getting to know you better! Best wishes katt

My son was dx July 2005 with WG, just interested in talking with other parents!

i want to find people who have this disease, so that i can ask questions, and talk with them and just find out how they feel and what they are doing to feel better and so on.

My name is Lisa, and my husband, David, was dx’d in late 2006 with WG that has since caused renal failure.

I have wegeners. I want to be up to date on all meds and treatments

Hello my name is Jub Jub from FLorida, my niece Kaitlin is 13 and in June diagnoised with Wegener’s Granulomatosis, she has Granulomatoids on her lung and kidney’s chronic fatigue. When her symptom’s fist started she went to the Eye Doctor for a check up and was immediately sent to a specialist. who in his exact word’s " I do not know why you are here there is nothing wrong with you, (this was 1 1/2 years ago) then in November while I was visiting she was having really bad pains in her right hip, I had her stretching it and it seemed to help. Time went on and she would fall asleep with her hands over her head wake and and could not move till someone stretched her all out, went to Dr said or it is Juvinille Arthritis. put on Prednisone 10mg no help or relief at all. Then mouth froze, hours to release that, walked with a limp due the hip. Finally put in local hospital, same thing JA, transferred to Special Hospital 30 miles away for a week and parents were fed up, so they sent her to Cinncinatti Childrens and after only a few days a wonderful Physician Dr Henze from Munich, Germany, finally gave us a dianosis, she is on 90mg of Prednisone ad on Citoxin treatments once a month, she is feeling allot better and her hair is thinning but she a ONLY “13” does anyone know how long lie expectancy is for a child? Once it goes into remission does it come back worse?

My mom was just diagnosed with Wegener’s. I am just trying to find out some more information.

My mother has wegeners granulomatosis I heard about this site and thought maybe I could find more information on this curious and rare disease.

Hi, my name is Tim, and I was diagnosed with wegeners a little over a week ago. I have been looking up any info I can find but it is hard to find. I also have Polymyositis diagnosed two plus years ago. and I am not sure which is worse. It has been a rough time lately, but the worst is not knowing the outcome. The PM had been progressive, so I don’t know what to expect with the WG.

i have had WG since July last year, I need and want more info

Hi, I’m Kim, I was dx’d 2005, (full WG) like most people I’ve been through hell. But have been great as of the last 6 months. Still on pred. and cellcept, and other meds. Can’t seem to go below 15 mg of pred. without feeling symptoms. Had a flare last year that landed me in the hosp for a month. And I developed a second even rarer disease, pulmonary alveolar proteinosis, basically my lungs fill up with a sticky protien slowly drowning me. But both seem to be under control for now. I’m happy I’ve found this place. Nice to meet you all.

What a find- a place with fellow WG sufferers, who know and understand this disease (and know how to spell it too!) - I am 30, have been diagnosed for 15 years - in remission for past 8 years while having three beautiful children, currently in the middle of a flare and having a hard time coping with this one.

Hi Amy,
Have you found the WG Group on Yahoo yet? Look for it using wgdiscussion

Hi

I was diagnosed with WG in March 2007, at the age of 34. My condition was discovered when I was admitted to hospital with acute renal failure after feeling generally unwell for a couple of weeks (lethargy, loss of appetite, etc). In my case, only the kidneys were affected, so I guess in that sense I was quite lucky - no respiratory problems.

I had 10 sessions of plasma exchange (plasmapheresis) and started on 60mg prednisolone and 150mg cyclophosphamide.

It has now been six months since diagnosis and I am currently on azathioprine (Imuran) and 15mg prednisolone. I expect to be on these meds for another year.

I am now leading a normal life - back at work and feeling good.

I’ve lost most of my hair and haven’t had a period in 6 months (all due to the cyclophosphamide). I’ve also put on weight as I haven’t been able to exercise at my usual intensity (I used to be a long distance runner) plus of course, the pred gives you such an appetite! But I’m gradually getting into a new fitness regime involving swimming and gym and starting to take control of things again.

I’d be interested to hear from other people’s experience of WG, particular those in the UK…