Hey everybody! It's Vasculitis Awareness Week!
Anyone who has been reading this blog for a while, or actually knows me, or both, knows that I have vasculitis in the form of Wegener's Granulomatosis. I've blogged about my experiences with it before (click here to read my previous posts) and right now I don't really have anything new to say. I've been in remission for a little over three years (go me!) (knock on wood) and doing great. I have every intention of making it to five and throwing the biggest party ever to celebrate.
Even though I have blogged about some aspects of my Wegener's, I haven't really gone into what it is in general, or even how it specifically manifested for me. So that is what this post is going to be about.
Wegener's is a form of vasculitis that affects... well, it can affect just about everything. Mostly it goes after the sinuses and lungs and often will involve kidneys, ears, eyes, throat, skin and what the text books like to call "other body organs." Like I said, it can affect just about everything. I was lucky enough to only have it affect my lungs and nose, and only in a minor way. The last chest x-ray I had showed a little scar tissue, and my nose has gone a bit funny, but no other perminant damage.
So what happens in the affected areas is this: the blood vessels get inflamed and little clusters of granulomas may occur. What the hell is a granuloma? Good question. A granuloma is *ahem* an inflammatory tumor or growth composed of granulation tissue. I like to think of them as little clumps of yuck.
The symptoms of Wegener's are really fun because they are normal everyday kinds of things (at least at first). Some symptoms include: runny nose, nose bleeds, cough, fever, fatigue, joint pain, ear aches. So really, things that could easily be just a cold or flu. The trick is that they don't go away or respond to normal treatment (like antibiotics). There are also a slew of blood tests that can sometimes indicate that the disease is present. Often a biopsy is needed to make a diagnosis, but even that is only about 50% indicative.
Treatment is where is really gets fun though. Generally it involves chemo-therapy and steriods. There are many variations and combinations of different drugs that patients get, so I'm just going to tell you about me. My treatment lasted about two years. I started out with intravenus cytoxan and a corticosteriod (I don't remember what it was exactly. It made everything I ate taste really bitter though) while I was in the hospital. After I was released, I had to take massive doses of Prednisone and anti-biotics. I also had to go back to the hospital overnight every so many days for more chemo.
Eventually I moved on to taking cytoxan orally. As I got better my doctor slowly tapered my meds. About six months after the initial diagnosis, I had a little flare up and had to do a few outpatient IV steriods. Finally, I was able to move on to methotrexate- basically a matenence drug.
Well, this post is probably long enough. I'll post again tomorrow and tell you all more about my particular case. Anyone who read this is encouraged to share with everyone they know. Vasculitis is rare, and rarely diagnosed. A little awareness wont hurt anyone.
For further reading, check these out:
V.F. very dry explaination