Wegener's Granulomatosis

Well, i'm not the one with Wegener's Granulomatosis, that rare and "Lucky" man would be my dad. He was diagnosed with Wegener's in April of Last year. I was wondering if anyone here knows anything thats going to be important to keep in mind for the next 10-15 years. He is on medication, improving, but not in remission just yet. Would anyone be willing to share their stories?

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My sister has suffered from Wegener's since she was 14. When she had her first flare up she ended up in intensive care on a ventilator because the doctors just couldn't figure out what was wrong. Thankfully they worked it out just in time.

She's never had a flare up that bad again. They thought she was in remission for a while,but it turns out it was rumbling in the background causing problems and it flared up again when she started having children.

Initially they used steroids and chemotherapy drugs to control the condition, but she's hypersensitive to the chemotherapy drugs and kept ending up in hospital with poisoning from them. Now she has infusions of rituximab,a biological therapy, and tops up with steroids when she needs to.

For some reason, she wasn't put under the care of a rheumatologist until she was pregnant - needless to say,her meds have been far better managed since then and she is much improved.

She has found over the years that she has to be very firm and insistent with doctors to get the attention she needs. Most of them have never heard of wegener's and don't understand how serious it is.

She spends most of her time feeling reasonably well, but is rarely in true remission i'm afraid. Part of the reason for this is that her condition was initially mis managed.

Make sure the doctor's get right on top of your husband's condition now - and when they think it's in remission make sure they monitor it closely. Also,my sister says rituximab has been life changing - it is so much more effective than chemotherapy drugs and she has experienced no side effects. They may not offer this option as it's more expensive, but you may be able to ask for it.

Good luck to you both.

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Thank You! How is your sister doing now? Actually my dad is the one with Wegener's. How have the medications affected her, and how long has it been seen she was diagnosed?

Thank You.

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If your dad hasn't had an opthalmological exam, I suggest that he do so as the eye can be impacted by the inflammatory conditions of scleritis and uveitis.
granulomatus uveitis can occur impacting any part of the eye. sometimes it is called iritis or iridocyltis. sometimes it impacts the middle of the eye resulting in pars planitis and vitritis. it can also impact the back of the eye, macula and retina. these condtions can lead to severe vision loss if not properly treated quickly in a Wegener's Granulomatosus patient.

Wishing you the very best,
Mike Bartolatz

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Hi ,
I'm sorry to hear that your dad or anyone has WG. I have had it for 3 years but wasn't diagnosed right away. WG is so rare that most doctors ,even Rheumatologists, don't recognize it.

Thankfully I found a Rheum doc that discovered it and is now treating it. He also suggested that I go to the Cleveland Clinic where they are doing research on WG.

I've been there twice. She told me that they are still reserching it and are finding new meds . She also tells me if my doc and I are doing the right things.

Originally the prednisone and methatrexate worked wonders. Then Christmas Day , I had a big flare up. I couldn't move my leg . I raised the prednisone and a day later was better. Then my hands hurt really badly so we decided to raise the methatrexate. However, I feel nauseous and tired and hope to lower the dose when the flare up is under control. I also have crusts in my nose (classic WG) and am afraid of the nose collapsing (which I think isn't too common, but still scary) . I went to my ENT yesterday and he said things looked fine, Thank-God.

I take blood tests every 6 weeks to check that the meds aren't causing any problems to my other organs and take a chest X-ray and CT Scans of the lungs and sinuses once a year.

It's a crazy disease and without the support of my husband I don't know what I would have done.

It's hard to plan your life . The best you can do is live from day to day or remission to remission.

If you have any other questions feel free to write back. It helps to talk to someone with the same disease.

What are your dad's symptoms ?
And what meds is he taking?
Good Luck to him and thanks for standing by him.

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the doctor can provide a drug such as Zofran to help with the nausea associated with MTX use or he can switch you to injectible MTX which requires less of the med to get the job done and which also has fewer side effects. are you taking an iron supplement about 11 hours after taking the MTX? this is critical to wait this long so that the iron doesn't adversely affect the way MTX works, but it is needed to replace Iron which leads to fatigue, low platelets etc. make sure you take the iron with food as it causes nausea too.

Wish you the very best,

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here is some information on Wegener's granulomatosis and eye disease from the Ocular Immunology and Uveitis Foundation, Cambridge, MA USA

wish you the best,

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Thanks to everyone for their replies. I really appreciate it! He started a blog, this is the link, http://rajwegener.blogspot.com/2009/05/new-lease-of-life-background-i-had-b een.html . This is pretty much his journey from a normal man, to someone who takes over 10 pills day.

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Hi, my sister's doing well, thanks. Her inflammatory markers are up and down, and she has various aches and pains - but she feels well enough to deal with 3 kids under 5, just! She's very happy with her meds at the moment.

She was diagnosed with wegener's 15 years ago. They only got the meds right about 2 yrs ago! She absolutely hates taking steroids and will only take them if she's desperate. She was starting to get a hump back from taking them so often and that really bothered her.

She doesn't have classic presentation of wegener's, but it's the closest diagnosis they could come up with.

She's set up a support group on facebook if you're interested:

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