Hello,

Please allow me to introduce myself. My name is Ruby. I was diagnosed with Wegener's about 16 years ago. I had typical symptoms and was being treated by an ENT doctor for what was thought to be a difficult sinus infection. I kept thinking I was getting better with each new antibiotic and then would get worse. My primary symptoms were this intense central facial pain and intermittent joint pain that migrated from joint to joint. And I could not sleep because I couldn't breathe through my nose lying down. I was admitted to the hospital after a couple of months of that and underwent sinus surgery. Lab studies combined with the biopsy and clinical features confirmed the diagnosis of Wegener's. I had kidney and lung involvement and was started on prednisone and cyclophosphamide. This was before rituximab was being used. I remember the first night after I got my first dose of IV steroids I slept five hours. When I woke up I could have cried for joy. I was so exhausted for the next six months I fell asleep in the middle of conversations. It was wonderful to sleep.

I got better and weaned to methotrexate and low doses of steroids. My kidney and lung problems resolved completely and have never recurred. I eventually stopped all medications after about three or four years. I had a bad flare a couple of years later and my doctor advised rituximab. I liked that a lot better than the cyclophosphamide which made me lose a lot of hair. I guess I've taken the rituximab off and on for about 10 years. I stopped it for about a year and a half after the pandemic began. By the time I got the vaccine, I was anxious to take it again. Since then I've begun taking it on a regular maintenance schedule every six months. I just finished an infusion about a week ago. I have a lot of nuisance symptoms as I approach the six month mark, but I've never had any abnormal lab findings other than the ANCA titer which has been pretty stable but always positive. The worst symptom for me now is this anxiety which starts to trouble me as I approach the six month mark and peaks a few days after my infusion, and is the reason I sought out this support group.

When I was first diagnosed I found and registered for an online support group but I was really frightened about the diagnosis and reading the posts only made that worse so I never posted and never logged in again after that first time. So recently I thought I might give it another shot. In 16 years of having this diagnosis I have never to my knowledge met another person with the same disease. I thought it might just help to interact with some people who had a similar experience. The group I had joined before didn't seem to exist anymore and I found this one. Reading your posts made me feel so much better, my anxiety kind of melted away and I appreciate you all very much for that.

So for what I hope may help some of you who are looking for better understanding: I continued to work for about 14 years after my diagnosis. By the sheerest chance I happened to have a job which allowed me to work from home for the first 10 years, which was a big help. Then I took a job that required me to go into an office in town and continued in that for about 4 years. I decided to retire about six months into the pandemic and here I am now.

Since the diagnosis I have lived a pretty normal life. I have travelled and have a vegetable garden in the spring and a fruit orchard. I admit I get more exercise than food from that but I enjoy it. Since my diagnosis, our son married and he and his wife had two children who are early teens. About a year ago they surprised everybody by saying they were expecting another baby and now we have three grandchildren. My life is very good.

I don't think my case is that unusual. I have all the symptoms you have described in your posts and I take pretty intense precautions to avoid exposure to COVID. I wear a mask and don't often go into crowded places. But my husband and I went to a Bob Dylan concert and went to visit our new grandbaby. Didn't get COVID. If any of you are worried about whether you can still have a good life, I'm telling you you can. This stuff doesn't go away although I admit I sometimes still fantasize that it might. It won't. But it doesn't define us. It's just something we have and they know how to treat it.

I look forward to visiting with you all in the future.

Thanks very much,
Ruby