Hello from Connecticut (transplant from the DC metro)

[lag713]

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.

[Rose]

Hi and welcome

Sorry that you have had this diagnosis so young and everyone here understands your fears for the future. The good news is you have happened upon the best site on the internet to find information about this disease. Ask questions, lots of them and educate yourself about this disease. Knowledge of WG is your best weapon to ensure that there will be a good chance of living a relatively 'normal' life. There will be someone here who can answer your question or, if not, direct you to where you will find information. It does seem that they have caught it early which is great so just make sure are responding to treatment. I do think you should consult with an Opthalmologist concerning your eye problems as WG can affect the eyes and requires a specialist consultation. Is this a new development? If so it may mean that you require some adjustment to your treatment .

Rose

[lag713]

Hi Rose, Thank you for the warm welcome. I spend a lot of time doing research (as well as teaching and taking classes) in graduate school so I've put those skills to good use since my diagnosis. I've read dozens of academic journal articles about vasculitis and Wegener's as well as about a million general information websites. I've joked that I should have an honorary MD by now.

My eye symptoms came up in late January/February and started to dissipate but I've been dealing with them off and on. The injectable MTX was supposed to solve the problem and it has definitely helped but not gone away completely. I have been thinking about seeing an opthalmologist but I've been busy and putting it off because I'm nervous about what they might find. Silly I know...

[KimH]

Hi, I live in NW CT and see a weg specialist in NYC. I found even the doctors at Yale are not up to speed on wegeners. My rhuemy is up here but we consult with the other Dr. in NY. If you are concerned about your eye seek out the answer. The worry can be worse than knowing. Everyone on here is a great resource and wonderful caring people.

[lag713]

Thanks for the advice, Kim! Would you mind sharing the name of your weg specialist? My rheumy is within 10 minutes of home which is very helpful when I make visits so often. I was considering seeing a specialist in Boston (Dr. Paul Monach at Boston University) and participating in a research study that he is conducting. Have you heard of him?

VCRC Genetic Repository One-Time DNA Study
Longitudinal Protocol for Wegener's Granulomatosis and Microscopic Polyangiitis

[lag713]

Thank you for the welcome, Mike! I appreciate it!

[drz]

Thanks for the advice, Kim! Would you mind sharing the name of your weg specialist? My rheumy is within 10 minutes of home which is very helpful when I make visits so often. I was considering seeing a specialist in Boston (Dr. Paul Monach at Boston University) and participating in a research study that he is conducting. Have you heard of him?

VCRC Genetic Repository One-Time DNA Study
Longitudinal Protocol for Wegener's Granulomatosis and Microscopic Polyangiitis

I would encourage you to join the study to get an expert consultation and to help us try find a better treatment for our GPA. I go to Mayo for their study evaluation and get a good consultation report sent back to my treating doctors. You can sign up for annual visits or quarterly ones. There are about half dozen places collecting data for their study which is a a combined effort of many staff at different locations but all have experts on GPA to see.

[MikeG-2012]

Hi, welcome to the madness that is WG/GPA. I think a good portion of the battle for a lot of us is a definitive diagnosis. I went 5 years before I was diagnosed. Hopefully, yours was caught before severe damage can be done to the major organs in your body that this disease preys upon. Sounds like your eyes might be the worst part of the disease for you, and I hope you can work those issues out with a good ophthalmologist.

Welcome to the group. You will find a very helpful, understanding group of folks here that may not much in common except for this awful disease and a willingness to fight for each other and be there for each other when we need it.