Greetings Fellow Weggies,

I've been lurking here and decided it's about time I introduced myself. I'm from Suffolk County NY.

I was diagnosed with limited GPA in August 2007 after 3mo of treatment with every antibiotic known for a sinus condition. I also had bone & joint pain, hearing & eye involvement. (don't you just love the limited part, I was falling apart) I was treated with Mtx & pred.I did rather well & by March of 2008 I was off pred.

In May of 09 I had unrelated surgery to remove a parotid tumor. The tumor was benign, but the surgeon saw a reactive lymph node & took a biopsy. It was positive for lymphoma. After a bone biopsy, endoscopy, colonoscopy, assorted scans, blood tests & visits to Memorial Sloane Kettering, I got a final diagnosis of Chronic Lymphocitic leukemia or CLL. Sounds worse than it is. My particular form is very mild & requires no treatment & I'm told I'll probably die of something else & if it wasn't for the surgery I'd probably never have been diagnosed. I see an oncologist every 2 months just to check everything out. (But, fact is CLL is the result of a messed up immune system.)

In August 2009, the Wegs came back. I was back on MTX & Pred. (Approved by the oncologists) I was on 60mg pred & 25 mg MTX in April 2010 when my kidneys became involved. After a week in the hospital for a kidney biopsy &treatment of 500 mg solumedrol a day, I went home to start treatment with cytoxin. A few weeks later I was back in the hospital with a DVT & pulmonary embolism. I had 6mo of ctx & slowly tapered the pred till I was off of it in June 2011.

Within a few weeks of finishing pred I relapsed again. This time we used Rituxan, 4 treatments, the last on 9/6/11. I saw a wegs specialist because my rheumy & kidney docs were not in sync about followup treatments. Because of the CLL we aren't doing anything. CLL is the sleeping giant in the room & nobody wants to wake him up. The pred is down to 5 mg a day & will probably stay that way since I seem to flare every time I go off the stuff. If I flare again I will probably go on a RTX maintenance schedule. RTX is safe to use with CLL. A lot of the others aren't.

Basically, for the last 14 months I've been OK & keeping my fingers crossed that things stay the way they are.

Thanks to everyone here for all your help and info. Up to now I've been on the taking end & I hope I'll be able to give back in the future.

Be well,
Jean Marie