New Weggie...!!!

[Dirty Don]

Hey all, have been reading your posts for a while...Andrew got me in finally. I was diagnosed this August, 2011 with what appears at this point to be a limited version of WG...mostly in my sinuses, some nerve damage (dropped foot), and all the irritating symptoms. If a friend and my wife hadn't seen that I was not doing well in early August, I may not be here today. I contracted pneumonia & possible Valley Fever (live near PHX)...after a lung biopsy, scaring my wife & children pretty badly, the hospital I was in sent my tests to Mayo Clinic as they could not be sure of what was going on in my lungs. The Mayo pathologist diagnosed WG. Now Mayo is treating me (prednisone & Methotrexate)...the clinic is the best, I am the luckiest. Has not been fun, am interested in sharing and learning more as this journey progresses...as much as I can. My best to all...am looking forward to meeting some of you in here.

[dennis2512]

hi was dx at the same time this year live in australia. im taking prednisolone and cyclophosmide bactrim nexium foxamax vit d and calcium. when did you notice you felt unwell do you get blocked nose dennis

[mishb]

Hello and welcome to both of you.
This is the best forum around and the people are just fantastic
I am sorry that you have to be here though but if anyone can help answer any questions you have, the vast experience from people on here are the ones to ask.

Take care

[Sangye]

Hi DirtyDon, welcome to the group. I'm glad your Wegs was caught before it went crazy and did more damage. Who do you see at Mayo? I used to see Dr Mazlumzadeh. He was better than my local docs (I lived in Flagstaff then) but isn't a Wegs specialist.

[Dirty Don]

Hi Dennis, sorry to hear your dx too...it's who we are I guess at this time! anyway, I may have had this for as long as 2 years it appears...although the dangerous and debilitating symptoms only came up this summer...blood in nose/lungs, severe fatigue, some sores, and no one at the first hospital knew what I had...so with some delays and a near death experience due to the lungs going berserk on me (they are clearing up now, almost back to normal), I survived the ordeal, ended up with Mayo clinic, and am getting aggressive treatment there. Too early to tell as Methotrexate has a reputation for acting slowly, but efficiently. No side effects that I've noticed so far and am on 3rd week of treatment.

[Dirty Don]

Hi Sangye, I love Mayo! I am so fortunate, in so many ways right now!! LOL! Anyway, I am in rheumatology with Dr Harman. She consults, as all Mayo docs do, with the rest of the staff, including an ENT, a pulminologist, and my regular internist. She's awesome, proactive, and has immediate access to the best. After dealing with my near death experience this summer (lungs went berserk as part of the original diagnosis efforts, so had surgery...almost killed me I guess, so I'm told! LOL! anyway, the Mayo docs I'm associated with are all Wegs familiar and experienced, they're all over me...seems they love a challenge!! I AM lucky! Thanks for the welcome! Am very glad I found this group!

[Dirty Don]

Thank you, yes, after first seeing this forum, I knew from the discussion threads that this would be a good resource, and possibly even a place of comfort when things aren't going like I think they should!! LOL!

[RudiK]

Hello DirtyDon and Dennis, welcome to the forum. This is a great place for information and support. I don't post as much as some of the other fellow WG patients, I'm not good at expressing myself, but "check in" daily and will share my knowledge if it helps. I'm from El Paso, Tx and was diagnosed in April of this year after having a variety weird health issues during the previous year. Like so many on this forum, I was lucky to find a doctor that recognized the illness and who brought in another doctor to treat it, otherwise I would be dead by now. The WG is now in remission. I consider myself one of the luckiest WG patients, if there is such a thing, in that I that don't have anywhere near the many other issues that some of our fellow WG patients on this forum have. Even so, I'm "stuck" with severely damaged kidneys (functioning at 40%), no feelings in my feet from the ankle on down, limited feelings in my right hand and "plucked up" left ear. I spent four days in the hospital, received three blood transfusions, and was the treated with Prednisone - 60 mg, Cyclophosphamide - 100 mg, and Sulfameth/Trimethoprim. I'm now off the Cyclophosphamide -replaced by Azathioprine - 150 mg, and off the Sulfameth/Trimethoprim, the Prednisone is now down to 7.5 mg.
Good luck getting into remission and staying there. Rudi K.

[Psyborg]

Welcome to the forum

[Dryhill]

Hi Dirty Don and Dennis,

Welcome to the Forum, it is a great pity you have to be heref you need advice or support this is the place to be. Like Rudik I do not post that much but do come to the forum each day to see what is going on.