PDA

View Full Version : Newbie to the forum



DAVEY8105
08-13-2008, 11:43 AM
After months of wishing I had other WG patients to talk to, I finally stumbled upon this forum and am so thankful for that! I helps to hear what other people go through and how they triumph over this disease. My name is Margaret and I am a 46 year old married mother of two teen girls. A few years back, I caught what I thought was the "flu", however, the sinus infections would not go away. I probably saw 5 different docs and tried every antibiotic/steroid treatment they could throw at me. I was sent to two separate Allergy specialists who gave me every test they could think of with no conclusions. One doc thought I may have "acid reflux" and sent me to a gastroenterologist with no positive result. During this time, I became pregnant and remarkably, all symptoms vanished until I miscarried 16 weeks later. Shortly after, the disease threw itself at me full force. I was in excruciating pain, my sinuses were 85% blocked, ears so infected I could not hear well, eyes oozing so much infection that I could barely see. At the time I was sent to yet another allergist who said she could do nothing for me and told me to see my ENT. Fortunately, the new ENT I went to had a "hunch" that he knew my disease. He performed sinus surgery and through biopsy determined I had WG. I was put on Prednisone, Imuran and Bactrim and got to feeling so much better. My mother, however, was dying from cancer and after she passed away last fall, I believe the stress worsened my disease. I have since been put on Cytoxan infusions every 4 weeks except that my lungs have now become involved despite the treatments. My Dr.'s at the University of Washington want to start me on Rituximab. We are hoping this will work for me and put me into remission. One of the hardest things for me has been the side effects of the drugs.....the Prednisone makes me sleepless and anxious. The best thing (if there is one) is that you realize just how precious your family and friends are and, being a Christian, it has brought me closer to God. If anyone out there can tell me anything about the Rituximab, I would love to hear from you. God bless!

andrew
08-15-2008, 07:02 AM
Welcome! Thanks for signing up. It's great to be able to chat to others who are going through this disease. Although, I've yet to meet another 'weggie' in person, this is the next best thing :)

So sorry that you've had so much sadness during your affliction. Stress does indeed make things worse. This is something I've yet to learn properly, 5 years after diagnosis!

Family and friends can be the greatest support through these times and yes, you do have a much higher regard for life and what you have after going through something like this.

I hear you with the Pred side-effects. When I was on the Pred I could hardly sleep at all. Not only that, I was grumpy, irritable and would eat anything in site. I was a food vacuum :D

I think one of our other members, Gwenllian, can give you some info on Rituximab. She's had some success with it.