Wow - I am just sitting down to write this, and realizing this year marks 20 years that I have been living with Wegeners! That's hard to wrap my mind around!

I was diagnosed in 1996 at the age of 16 (Maybe 1997 at 17?) - it was so long ago at this point that it all seems a bit fuzzy. I had suffered from chronic sinus infections for at least a year or two, but then developed joint pain across my body that was repeatedly dismissed by my doctors. It finally got bad enough with swelling that my Doctor's Nurse Practitioner took notice and ran some tests. They discovered a severely elevated SED rate and began trying to schedule me in to see a Rheumie. In the mean time I developed a severe cough with blood. Needless to say - that sped up the process of getting me in to see a proper doc. It devolved pretty quickly from there. I had bad kidney, lung and sinus involvement, as well as skin rash and a myriad of other odd weggie symptoms. A kidney biopsy and a positive ANCA nailed down a diagnosis of Wegener's, and they started me on high doses of prednisone immediately. I felt quite a bit better from he prednisone at first, but then my lungs relapsed and I was sent to the hospital for over a week. They gave me IV prednisone in large doses and started me on Cytoxan. Once they felt I was stable they released me, however, I awoke the next morning with my left leg swollen to nearly twice it's size. I had developed blood clots. So back to the hospital for a Greenfield filter and another week long stay. Really scary stuff as a teen ager. The doc wasn't sure that my leg would ever go back to normal - but thankfully it did. I have some pretty stretched out skin at the top of my leg, but I have full function other than some occasional edema.

Dealing with all of that as a teenager was tough. I lost my hair and went through early menopause from the cytoxan, and gained a ton of weight, developed osteoporosis, and broke out terribly from the prednisone. Basically a 16 year old girl's nightmare. But I have an awesome family, and some pretty great friends that helped me through. I managed to graduate with high marks and even talked my parents into letting me go to university out of state. I did end up taking a semester of college off when I went into neutropenic fever from the cytoxan.

I weaned off all of the meds by the time I was a senior in college, and had several blissful med-free years. During my twenties, I didn't have the best insurance or a good doc, so a lot of what I know now were Wegener's symptoms went untreated. I have always suffered from chronic sinus infections that usually take 2 rounds of antibiotics and prednisone to treat. I've also had on and off problems with joint pain. Looking back on it, I was pretty lucky that I never had a full on flare.

In the past couple of years, the arthritis and sinus infections have gotten worse and have led me to seek better treatment. My insurance finally allows me to see my diagnosing Rheumie again (yay!) and he and his team have been great about monitoring my blood work, and easing my mind that a lot of the weird quirks of my body are just Weg symptoms. I've, thankfully never had another positive ANCA, but I do show signs of inflammation, and my kidney and liver functions often look off. We've been treating my current symptoms with low dose prednisone and plaquinil, but I would like to get off the pred. It makes me feel crazy, and I am now pre-diabetic. Unfortunately the joint pain it a real problem right now so we are considering Methotrexate or Imuran. I have never taken either of these - so I am in the process of doing my research so I can make an informed decision.

I've lurked around this message board for years, and found a lot of solace and reassurance from the members, but I have never been brave enough to join in the conversation. But since I have been dealing with the Wegener's more lately - it seemed time to share my experience and maybe gain some new friends that can commiserate.