Living with Wegener's Vasculitis

My boyfriend is dealing with this disease—it’s incredibly rare and extremely serious. Unfortunately 😢😢😢😢 If anyone here is living with the same condition, please lay it all out. How long have you been fighting this? What does your treatment plan look like? What meds are you on, how do you take them, and why those specific ones? Just give me everything you think is relevant. I need help.
p.s. I've spent way too much time reading random case studies online, but I need real insight from people actually going through it. Please help!🙂

Hey... I’ve been living with this disease myself. If you ever feel like talking or have questions about what it's actually like... just reach out.

Wegener's granulomatosis (WG) is actually quite rare, affecting roughly one out of every 20,000 to 30,000 people in the US. The symptoms we deal with are really just the fallout from inflammation that can hit all sorts of different tissues throughout the body, including the blood vessels, which is what we call Vasculitis.
Basically, Vasculitis is just an umbrella term for a whole group of conditions where the blood vessels become inflamed, and it can happen anywhere—it might affect the largest vessels in the body, like the aorta, or even the tiniest little capillaries in your skin. Depending on the specific type of Vasculitis you have, the size of the vessels involved can change quite a bit.
For most types of Vasculitis, doctors still don't fully understand the exact cause. While infections definitely play a role in many cases, the general thinking is that for many people, the disease might be triggered by a specific infection in someone whose genetics (along with other various factors) make them more susceptible to developing Vasculitis.

I was personally diagnosed back in September 2010, and since then, my life has mostly been a cycle of treatments, endless testing, doctor check-ups, and just trying our best to learn everything possible about this condition. If anyone else here is living with a Wegener diagnosis, please reach out and say hello.

What kind of symptoms were you dealing with? And what does your treatment plan look like now?

I’ve got Vasculitis too, specifically Raynaud's—where my small blood vessels just freak out whenever it gets cold.

It all kicked off with what I genuinely thought was just a standard cold, plus this nagging pain in my shoulder—honestly, I figured it was just from blasting the AC in my car during the heatwave last July. At first, they just put me on the usual antibiotics, things like Azithromycin and such, but then the shoulder pain started acting weirdly, moving around until it felt like it was hitting every single joint in my body. Then came an ear infection, or at least that’s how it felt, and my blood work just kept getting worse and worse; I must have been back to the doctor maybe twenty different times in just a six-week span. Eventually, things took a scary turn and I ended up in the pulmonology ward because I couldn't catch my breath and started coughing up blood. It took forever to get a clear diagnosis while I was hospitalized, but it turns out I had an ocular thrombosis along with this diagnosis. Since dealing with this, my hearing has taken a massive hit, and on top of my lungs, eyes, and ears, my sinuses are also struggling. As for the treatment, I'm currently on Medrol and Cyclophosphamide, along with a whole laundry list of other medications to manage everything.

I did a little digging online about your condition, but there isn't much info out there in American medical sites.

Is yours an autoimmune thing too? And are you actually feeling any better since starting therapy?

With my situation, they told me there’s no cure—unless I go under the knife for surgery, which involves cutting some kind of nerves if I understood them right.

Actually, I ended up signing up for the Vasculitis Foundation website—they have a full list of all the different types of Vasculitis there http://www.vasculitisfoundation.org/ which confirms it’s an autoimmune condition too. Thankfully, things are looking up, though they're still nowhere near where I was at the start (I went from being stuck in a hospital bed for 30 days straight to spending 10 of those in the ICU). I’m still dealing with some pretty heavy doses of medication, especially since it's only been seven months since this whole thing began.

So, do you have any other autoimmune issues going on?

I’m really hoping someone else pops up here with this diagnosis, even if people don't think it's all that common.

Luckily, I haven't been hit by it (so far), though I did stumble upon a few people online who were dealing with Wegener's, and then there was one other person fighting a different autoimmune issue...

eila... I've been living with a diagnosis of Wegener's granulomatosis for over seven years now. If you're looking for more specific details, feel free to leave your email address.

Feel free to drop your thoughts here too. Not many people deal with this, and I’m convinced your stories will be a huge help to anyone reading through this thread. 🙂

If anyone happens to have a question, I'd be more than happy to provide an answer...

Seriously, please reach out to me too... I've been struggling with this for two years now. Thanks in advance!
anita_sahinovic@hotmail.com

Anita, you’ve got mail =)

So, my boyfriend was diagnosed with Wegener back in 2010, and I was hoping maybe someone here could share some insight or data regarding the condition? He ended up being out of work for a full year because of it... I guess it's been quite a journey. Currently, he's on Medrol and Endoxan to manage everything. If anyone has any info, you can reach me at mime_k@hotmail.com... thanks so much!

Rebecca Palmer69 said:My boyfriend has Wegener, so I'm reaching out to see if anyone can share some insight about this disease. He was diagnosed back in 2010 and ended up on sick leave for an entire year. Currently, he's taking Medrol and Endoxan. If you have any information, please email me at mime_k@hotmail.com... thanks.

It's all over Wikipedia. Just type "Wegener granulomatosis" into Google.

Hi everyone!

@Elizabeth Gray83/">@@Elizabeth Gray83... would you mind if I sent you an email as well? I've actually just been diagnosed with Wegener too...

I was wondering, what have your experiences been like? I suppose I'm curious about how often you usually go in for checkups and what kind of therapy you're undergoing?

Sending my best wishes to all of you! 🙂

Morgan Martin31 said:Hi everyone!

@Elizabeth Gray83/">@@Elizabeth Gray83... would you mind if I sent you an email as well? I've recently been diagnosed with Wegener too...

I was wondering, what have your experiences been like? Like, how often do you usually have to go in for checkups, and what does the treatment typically look like?

Sending my best wishes to everyone! 🙂

My email address is _ erna.imam@gmail.com
I would be so incredibly grateful for any extra information or insight you might be able to share!!!

you've got mail