lag713
03-26-2014, 08:13 AM
Hello all,
I was so happy to find an active forum for those affected by Wegener's. I am a 26 year old female trying to figure out how to manage this disease and finish graduate school.
I first experienced joint pain in my hands/fingers/wrists around July 2013. I thought I must be experiencing symptoms of carpal tunnel given that my work requires extensive computer use. I went to an urgent care center and after being unable to create signs by manipulating my hands/wrists I was referred to an orthopedic surgeon. He could tell almost immediately that it was not carpal tunnel and referred me to a rheumatologist. I was experiencing fatigue, joint pain and swelling, but I was otherwise quite healthy.
My rheumatologist started by giving me a shot of depo medrol to help with the joint pain while she ordered blood tests. I came back negative for almost everything. She thought I could have lupus, lyme disease, hepatitis, etc. She started focusing on my "allergies" and nasal symptoms that were recurrent and GI symptoms. I did not consider either to be an issue. She wanted to rule out Wegener's so she ordered a CT scan which was clear and an evaluation with an ENT. He noted inflammation in my evaluation and prescribed nasonex. I didn't understand that she was trying to rule out Wegener's at the time and I don't think the ENT did either. This was approximately September.
My ANCA blood tests did show inflammation and disease activity. She was reluctant to give me a diagnosis of Wegener's so she gave me "non-specified inflammatory polyarapathy" (or inflamation in 5 or more joints but I don't know what's causing it). She started me on methotrexate in October. She gave me the diagnosis of Wegener's in January 2014. I've responded fairly well to methotrexate. I started having more symptoms and increased ANCA blood test results in February but I went on an injectable form of methotrexate and received another depo medrol shot which seemed to give the methotrexate the boost it needed. I was worried I would need to go on rituximab but it seems like methotrexate may be doing the job. My kidneys are unaffected for now.
I have been dealing with some eye symptoms which concerns me. I think there may be some inflammation because I have light sensitivity, tearing, and occasionally pain.
I'm honestly terrified of what this disease will mean for my future but I'm hopeful that I will be able to live a relatively "normal" life that I want. I feel very fortunate to be in fairly good health. It seems like my rheumatologist caught it before any organ damage could occur.
I look forward to getting to know you. :biggrin1:
I was so happy to find an active forum for those affected by Wegener's. I am a 26 year old female trying to figure out how to manage this disease and finish graduate school.
I first experienced joint pain in my hands/fingers/wrists around July 2013. I thought I must be experiencing symptoms of carpal tunnel given that my work requires extensive computer use. I went to an urgent care center and after being unable to create signs by manipulating my hands/wrists I was referred to an orthopedic surgeon. He could tell almost immediately that it was not carpal tunnel and referred me to a rheumatologist. I was experiencing fatigue, joint pain and swelling, but I was otherwise quite healthy.
My rheumatologist started by giving me a shot of depo medrol to help with the joint pain while she ordered blood tests. I came back negative for almost everything. She thought I could have lupus, lyme disease, hepatitis, etc. She started focusing on my "allergies" and nasal symptoms that were recurrent and GI symptoms. I did not consider either to be an issue. She wanted to rule out Wegener's so she ordered a CT scan which was clear and an evaluation with an ENT. He noted inflammation in my evaluation and prescribed nasonex. I didn't understand that she was trying to rule out Wegener's at the time and I don't think the ENT did either. This was approximately September.
My ANCA blood tests did show inflammation and disease activity. She was reluctant to give me a diagnosis of Wegener's so she gave me "non-specified inflammatory polyarapathy" (or inflamation in 5 or more joints but I don't know what's causing it). She started me on methotrexate in October. She gave me the diagnosis of Wegener's in January 2014. I've responded fairly well to methotrexate. I started having more symptoms and increased ANCA blood test results in February but I went on an injectable form of methotrexate and received another depo medrol shot which seemed to give the methotrexate the boost it needed. I was worried I would need to go on rituximab but it seems like methotrexate may be doing the job. My kidneys are unaffected for now.
I have been dealing with some eye symptoms which concerns me. I think there may be some inflammation because I have light sensitivity, tearing, and occasionally pain.
I'm honestly terrified of what this disease will mean for my future but I'm hopeful that I will be able to live a relatively "normal" life that I want. I feel very fortunate to be in fairly good health. It seems like my rheumatologist caught it before any organ damage could occur.
I look forward to getting to know you. :biggrin1: