Living with Wegener's Vasculitis

Hey everyone, I’m looking for some insight regarding Wegener granulomatosis. Does anyone know what the standard treatment looks like these days? Also, I was wondering if there's anything out there in the realm of alternative medicine that actually works? On top of that, which hospitals or clinics would you say are the absolute best for handling this kind of thing? Seriously, any bit of info or advice you can toss my way would be a lifesaver. Thanks so much

I noticed this thread has been sitting here gathering dust for ages, so I figured it was time to shake things up a bit. I’ve been struggling for three years now without an official Wegener's diagnosis—just a vague label of "vasculitis." It’s hit my lungs, most of my sinuses, and my eyes too (though honestly, I suspect the eye issues are just a side effect of those massive steroid doses). I’m currently getting treated in Cincinnati, and my regimen consists of CellCept (750mg twice a day) plus a 5mg dose of Prednisone right now. From the very beginning, I’ve had this nagging feeling that I’m just spinning my wheels in a loop with no way out...

If anyone has any new, fresh, or even slightly recent info, please, please share it. Are you actually seeing improvement? Is there any real hope for a full recovery? Plus all those other million questions we're all constantly asking ourselves.

Thanks 👍😉😉😉😉

Patrick Thomas23 said:I noticed this thread hasn't been touched in a long, long time—so let's shake things up a bit. I've been struggling for three years now without a definitive diagnosis of Wegener's, just a general "vasculitis." It’s hit my lungs, most of my sinuses, and my eyes—though I suspect the eye issues might actually be a side effect from high doses of corticosteroids. I am currently receiving treatment in Cincinnati—my regimen includes CellCept (750mg twice daily) and Prednisone (currently at 5mg). From the very beginning, I’ve felt like I'm stuck in a loop with no way out...

If anyone has any new or recent insights, please share them. Are you seeing improvements? Is there actual hope for a cure? Or any other questions and answers you can offer.

Wegener's is an autoimmune condition—and much like all autoimmune diseases, it is chronic—essentially lifelong. Because of that, there isn't a "cure" per se, though there is certainly hope for halting the progression of the disease.

Yes, those eye issues—perhaps keratokonjunctivitis?—could very well be linked to the high steroid doses.

Maybe I'm just the only idiot left who still secretly clings to the idea of an actual cure🙂🙂🙂🙂🙂🙂

Fine, let’s look at it this way... how do you actually "prevent" relapses? I don't know if you guys follow what I'm getting at... What can I possibly do to stop my lungs from bleeding out again? Since November 2012, I've dealt with about 10 to 12 relapses—some hitting hard, others more mild—and I have spent a million lifetimes questioning myself: am I doing something to trigger this? The only thing I can truly remember is pure physical exhaustion... 🙄

I don't think there is much you can control personally here—the disease follows its own course, which really ought to be managed through medication.
Wegener's is quite stubborn—even with therapy, relapses are unfortunately common.

The combination of mycophenolate and prednisone seems a bit unusual to me.
Have you already undergone treatment with cyclophosphamide (Endotoxin, Sandimmun...)?

If conventional therapy fails to work, there is Rituximab (Mabthera)—a monoclonal antibody targeting CD20 lymphocytes that can successfully treat Wegener's.

How are your kidneys doing? Any proteinuria?

Sandra Vaughn50 said:I don't think there's much you can do to control it yourself. The disease follows its own path—something that really needs to be managed with medication.
Wegener's is pretty stubborn, too, and despite therapy, relapses happen all the time.

The combination of mycophenolate and prednisone seems a bit odd to me, honestly.
Have you already undergone cyclophosphamide therapy (Endotoxin, Sandimmun...)?

If standard treatment isn't cutting it, there's Rituximab (Mabthera)—it's a monoclonal antibody against CD20 lymphocytes that can successfully treat Wegener's.

How are your kidneys doing? Any proteinuria?

I used Endotoxin at the start of the illness—just one round of therapy.
Then Mabthera three times in 2013 and three times in 2014. After that, I "managed" to hold out for 10 months in 2013 without a relapse, and since 2014, it's been 12 months.

So, I actually disagree with you there... because from my experience, if I have too many "rough" days in a row—physical exhaustion, lack of sleep, that feeling of "inflammation"—and if I don't "hit the brakes" myself... slow down, rest, recover... then a flare-up happens. That’s the only pattern I see in my own body... and stress! Stress absolutely kills me. I am 10000% certain that one of my relapses was triggered by stress.

My CRP levels are always above the minimum... they never stay steady for me.

Diet? Anti-inflammatory diet? Anyone found anything that actually works?

Patrick Thomas23 said:Endoxan at the start, just one round of therapy.
Mabthera 3x in 2013 and 3x in 2014. After that, I managed to stay relapse-free for 10 months in 2013, and since 2014, it's been 12 months.

I have to disagree with you there... I notice that if I have too many "rough" days in a row—physical exhaustion, lack of sleep, feeling that "inflammation" creeping in—and I don't pull back myself... slow down, rest, recover... then bleeding happens. That’s the only pattern I see in my own body. And stress! It kills me. I am 10000% certain one of my relapses was triggered by stress.

My CRP levels are always above the minimum... they never stay steady for me.

Diet? Anti-inflammatory diet? Any actual insights? Does it help anyone?

If anyone knows anything about this disease, please reach out via DM.
I was diagnosed just a few days ago, so I'm really looking for your experiences.

Hey everyone... I'd really appreciate some more info regarding 😢the disease.