a long road,BUT FINALLY IN REMISSION

[beanie]

Hey guys,I am new to this site,was told about the site from another WG patient,and she is right this might be the best site on the web that deals with WG.
I was DX with wegeners a couple years ago,when it started i was diagnosed with everything from the flu to uvietus.I had completly lost my voice and eyes where red and swollen shut,my trachea had closed up alot which made it really hard to breathe(the Dr. said i had asthma,he was wrong on that one)had all the usual joint pain,and to top it all off i had saddle nose
Finally my local Dr, sent me to an eye spec.and he wanted me to see a rheumatologist.and after many test he decided i had WG and was referred to johns hopkins in baltimore.The doctors at hopkins have taken really good care of me I was started on methotrexate 25mg once a week bactrim,folic acid and prevacid. It seems like it took forever to finally get it in remission but after about 6 months i was told that i was finally there.
I have had several surgeries along the way including surgery to remove scar tissue from my eyes and a trachea surgery to open me up so i can breathe and the surgery to fix my saddle nose.they had to take a rib from me and place it in my nose to make the bridge,but it was well worth it,and i can also breathe thru my nose now so i think they did a good job with it.
If anyone would like to send me a msg to discuss WG or just to chat feel free.I will be checking my msg box often,and if anyone has been recently DX with WG keep your head up and be optimistic it gets better
MIKE

[andrew]

Congrats on being in remission and thanks for the positive comments about the site It's sad that so many of us are mis-diagnosed sometimes for many years. Sounds like the surgeries were very successful and you must feel so much more comfortable now being able to breathe properly. Welcome to the site, it's great to have you here!

[elephant]

Welcome! That is great that your in remission. Are you still taking the methotrexate? I know sometimes some just stay on the Bactrim once they reach remission. But everyone is different.

[Doug]

Welcome to the site, Beanie, and congratulations on remission and- best of all!- unimpaired breathing again! That is the scariest thing a person can experience, I think, breathing and not being able to get enough air in. Suffocation was the worst symptom I had, and they had the mask up to 5, which is something like a hurricane, before I got sufficient oxygen!

Feel free to stick around and post answers to new members' questions, too. Every time I think maybe I should move on, someone new brings up a question or concern I feel I can help answer, along with the excellent contributions of the others on the site.

A lot of what makes this a helpful site, I think, is the diversity of experiences shared. Your experience can help with that diversity of experience. The saddle nose experience isn't common, so far, on this site, so that alone can make you valuable when the next person experiencing that condition comes on with questions about the operation and its benefits.

[Sangye]

Hi Beanie Mike,
Welcome to the group! Your story gives me (and all of us) a lot of hope. Anytime we hear someone is in remission it gives the rest of us hope that we can get there, too.

I go to JHU, too. I was already being treated for 2.5 yrs by the time I got there. I would have had a completely different 2.5 yrs if I'd had a Wegs specialist sooner. Which doc do you see there? My rheumy is Dr Seo.

[coffeelover]

Welcome Beanie! Isn't it nice to be able to breathe again? I know that closed trachea feeling.....
coffeelover