Hi! I am very new!!!

[Trudy]

My doc said that most cases of split ANCAs like that mean that the person has WG and CSS.

Phil, I googled CSS without much success..what does it stand for? I have been both MPO and PR3 positive also.

You have been on alot more, does this mean you are doing better? Hope so!
Trudy

[delorisdoe]

churg straus syndrome would be my best guess

[Al]

churg straus syndrome would be my best guess

That would be correct. CSS is the often forgotten runt of the evil litter of ANCA diseases. I take that back--it is slightly more discussed than renal-limited AAV, but not by much. It is usually distinguished from MPA because of the asthma that its sufferers incur and from GPA due to the dearth of granulomas.

Al

[maria garcia]

At first I thought CSS because of my daughters rhinitis and allergies that also goes with CSS. But no Asthma so I ruled it out. My daughters doctor, I don't think even knows exactly. There all treated the same depending on the severity of the damage. So the Dr. doesn't seem to be to concerned about the name. I call it AI vasculities.

[Al]

At first I thought CSS because of my daughters rhinitis and allergies that also goes with CSS. But no Asthma so I ruled it out. My daughters doctor, I don't think even knows exactly. There all treated the same depending on the severity of the damage. So the Dr. doesn't seem to be to concerned about the name. I call it AI vasculities.

Good for you, Maria. The name doesn't mean so much. What is important now is that your daughter gets good treatment and lives a long and productive life. Now, take your your family out to dinner (at a healthy restaurant), and tell them I told you to!

AL

[ShaniBooT]

Hi Cindy,
Welcome, I'm leaning a lot here. Dean and I just joined last month. Dean was Diagnosed last December when he finely ended up in the hospital. We believe he had WG for at least two years before he finely got really sick. He was having so much problems with his ears and joints. He finely lost his hearing in one ear and 50 percent in the other. We have all kinds of hearing devises laying around our home. We keep trying different things so he can hear. He now has it in his sinuses and his doctor told him last week that he has a tumor there, because his nose bleeds a lot now. His eyes and head hurt him a lot. We are going to be going to a ENT doctor on Monday. He had nogales on his lungs and he was spitting up blood. They put him on Prednisone and Methotrexate right away. We would like to know about you and what the diagnose is so let us know.
Barbara & Dean

[kelly]

hi Cindy i also had those purple sores on my hands and one under my right index finger and lost the tip of it how about you are your fingers ok also i have noticed that when a flare comes on i get those spots on my foingers and increse the pred and they go away as does the flare.