I'm New - Limited Wegener's Disease

[Sangye]

Hi Brooke,
Welcome to the group! I'm glad to hear you're in safe hands at Mayo Rochester. They're one of the few Vasculitis centers in the world. I'm assuming you have a rheumatologist there who oversees your care? That is a must with Wegs.

I'm glad to hear your treatment is going well. I'm surprised to hear they're "only" using methotrexate, since it's usually not strong enough to get active Wegs under control. They usually use it as a "maintenance" drug once the disease is less active. If a Mayo rheumy says it's good enough for you, then I wouldn't have my doubts.

[firecracker]

You sound just like me way too much. Years of doctors guessing meanwhile chunks of stuff coming from your nose and damage done that was unexplainable. I took mtx for 8 months starting two septembers ago. I stopped this past May. I got too sick from it. It may or may not have helped. Two months off of it and i was in so much face pain i couldnt stand it. My bloodwork is horrible again. I start imuran saturday. I got toxic from mtx so i cant wait to see what this new med does. I will have to take it daily and get bloodwork weekly to monitor the damage i guess. For a month i have been on 30 mg pred to control the inflammation and pain til i got back to my rheum who forgot who i was and that he had actually seen me before and figured i could wait to see him in 4 weeks even though i have been bleeding out of my right sinus and face is swelled up like a freak. I feel for you‏. if you read my past posts, you will see i have some really weird stuff that seems to be somewhat different then the rest here. the only thing i have that says "wg" to the docs is the damage done and the pr3 count.

[Sangye]

Firecracker, it's good to hear from you. I've never taken imuran, but I've always heard that it's very well-tolerated. I can't think of anyone who's had any side effects from it. It can be hard on your liver, so they do blood work to make sure your liver is okay. Many people stay on imuran for years and do fine.

I'm sorry to hear you've been in so much pain, but glad you're finally on meds that can help.

[firecracker]

I def agree on the mtx not being strong enough to knock out the active weg. I just hope something is. Like what i am about to take. Mayo is who put me on mtx but it was the florida mayo.

[elephant]

Firecracker hope you start to feel better. Having facial pain is a nightmare. Love your positive attitude!

[Brooke]

Thank you so much to everybody who has responded, it is great to know there are others that know what I am going through.
I do not have a rheumatologist. They say I only have Limited Wegener's Disease. My sinuses are very affected and I have subglottic stenosis and little spot on my lung. I cough a lot and am wheezy and hard to breathe sometimes. Does anybody else just have limited wegener's? I am a bit worried now about the methotrexate not going to work? I am on 25 mg and will have to be on that for 2 years. I just started it one month ago.

[deb]

Welcome, Brooke! I too have limited Weg. with mostly sinus involvement. I was diagnosed June 2008 and have been on a weekly injection of Methotrexate since then. I also am on pred. which varies from 15-60 based on my flares and how I am doing. I have not have any trouble or apparent side effects from the Methotrexate (other than 2 flares during that time that necessitated more raising pred to get back under control). I have seen several posts from other who have experienced some issues with it though (nausea, sleep issues, etc). I am wondering if those who have posted issues with it were taking the oral form. We did raise the amount of Methotrexate I take once. I think it is helping without doing too much other damage. I was told that we need to go to Ritux if I flare again since my doctor is seeing it help with his patients with recurrent flares.

[Brooke]

Thanks Deb. How come you are on injections vs oral? What is Ritux?
My blood work (anca) and urine test have always come back good. The pulmonologist at Mayo Clinic is the one who diagnosed me with Limited Wegener's Disease due to the looks of my nose biopsy.
Does anybody know if I will be able to have more children after my treatment is done? How about if my eggs are good now, (being on methotrexate) if we were to have a surrogate?
Do you think having a blood clot in my leg has anything to do with this?
Sorry, my questions are all random!

[Jack]

If you have a thrombosis in your leg is is almost certainly connected with having Wegener's. The risk is over 20 times higher in Wegener's patients and I think I am suffering from it myself at the moment.

The term "Limited Wegener's" seems to be used a good deal at the moment and I'm not sure that it is at all helpfull. I have yet to hear of a single patient on the Forum or elsewhere who has collected the full range of symptoms ( I probably come nearest ), but new symptoms are a very common occurance for many of us. You don't need the full set for it to ruin your day!

[Sangye]

(Jack, do you have another clot?)

Brooke,
Limited Wegener's is the same disease as Wegener's. It only means that the disease hasn't affected multiple body systems, like the kidneys. It isn't a statement about the severity of your case. You could have severe lung involvement that could be deadly, but it's still considered "Limited" because it's "only" in the lungs.

Also, there is nothing that limits Wegs from becoming more systemic. It's not like cancer that is either local or metastatic.

I have limited Wegs-- many people on here do. Still, the disease and complications from it have almost killed me numerous times. Others with more systemic involvement are able to do things I'm still not!

The take-home message is that Wegs is Wegs, and must be taken just as seriously no matter how and where it affects you.

Do you need help finding a Wegs specialist, Brooke?