Hey everyone,

Just three weeks ago I got diagnosed with Wegener’s. I live in the Silicon Valley.I think initially it started with my first ear infection ever this May. Symptoms like fatigue came to, but sometimes went away again. In July i got diagnosed with tendinitis as my knees where hurting super bad and I thought i was floxed by Cipro. The night sweats started, but I was under a lot of stress at that time and google said, it can happen. After flying home to my family in September I got a sinus infection I couldn’t get rid off and then the all over body ache started and the night sweats came back. I sent a message to my gp and she ordered me immediately in, took my blood, urin and sent me too get a chest x day done. In the afternoon I also had to do a cut scan. I basically had my diagnose the next day and she referred me to a rheumatologist with experience of this disease. A week later a good a lung biopsy done just to confirm everything. I have nodules in the lower part of my lungs and some cavities as well. What I don’t have is a problem to breath or shortness of breath. I started with 60mg prednisone which got lowered 4 days ago to 40mg after my new blood and Urin Test came back normal. I initially had a little amount of blood in my Urin, but the kidneys where still working good. Today I have a heart ultrasound as my heart rate is a little jumpy right now. Tomorrow I will have my third Rituxan infusion. I also take Atovaquone, as I can’t have sulfur drugs. My body is doing fine right now, I don’t have any pain and the tests gets redone I think in 3 weeks. All my doctors work together and have a positive attitude towards my chances, but I can’t see that right now. I’m so scared that I will cough up blood, as I haven’t done this yet. Not even after the biopsy. Mentally this diagnose hit me so hard that since yesterday I got a prescription for anti anxiety medicine. My doctors think it’s the steroids amping this all up. I also see a therapist right now. I’m still in shock and super overwhelmed by all this information. Seeing you posting here after been diagnosed for several years gives me some hope and I think people who are doing really well with this disease might not be posting here all the time. I know that with spotting a flare early and get treatment one is able to live a fairly normal life, but I am afraid I won’t spot it. I just don’t want to die so early. I want to have a family. My husband is doing great and he is positive that we can manage this. I am not sure how often I will look into this forum at the moment as I am not sure how I can handle all this information. I will go on vacation next week and I am still working. I hope this will keep the bad thoughts away. I just don’t want to get my life ruined by this disease!