Symptoms

[delorisdoe]

Interesting! I personally find Hawaii a terrific place for another reason: Cultural diversity is just part of the package. My niece's daughters are growing up speaking English, Pidgin, Mandarin from their paternal grandparents, some Danish

My cousins and his wife were in austrailia for medical school for the first five years of their 2 daughters lives...when they moved here they had the most addorable austrailian accents ever. They lost them quite quickly.

[manalolana]

Anyone taking Humira? Was in Mayo Dec 2011 and before we try RTX, they put me on Humira since that is the only immuno suppression I have not tried. So taking 40mg of Imuran daily, Predisone and Humira weekly.

[manalolana]

Curios. What symptoms do you guys have with our illness?

Thanks for your responses in advance!

[Pete]

Hello Manalolana,

When I first became ill, I had a middle ear infection in my right ear that did not respond well to antibiotics. This was followed in quick succession by a dry, non-productive cough, night sweats, fatigue, and loss of appetite. Chest x-ray initially showed a lesion that looked like a bullseye (think the Target logo) in my upper right lung. I spent a week in the hospital on IV antibiotics. I had biopsies of sinuses and lungs (bronchoscopies) that showed granulomas. This coupled with a high c-ANCA and some other blood anomalies suggested a high probability of WG. The official diagnosis was "mild WG". I was initially treated with 150 mg/day of cytoxan, 60 mg/day of prednisone, and a bactrim every day.

Initially, my primary wegs doc was a pulmonologist. I visited a wegs speciliast at Cleveland Clinic in June. She took me off cytoxan (after 16 months on it) and switched me to 15 mg/wk of methotrexate, 10 mg/day of prednisone, and a bactrim on M-W-F. I feel well now and do most of the things I enjoy doing. However, I get tired easily and I now have asthma for which I take singulair and pulmicort.

Hope this info helps.

Pete
dx 1/11

[manalolana]

Thanks Pete for sharing! Did you by any chance get fever regularly?

[annekat]

Pete, that sounds a lot like me, starting with the ear infection. But then things didn't happen as fast, I had recurring sinus infections for a couple of years, and some joint pain off and on, plus hearing and voice problems. Then it finally went into my lungs and I think I had something like that bullseye show on my Xray, too. A CT scan showed "numerous cavitary lesions" throughout my lungs, and the internist on duty suspected Wegs. This was confirmed by a nasal biopsy. Somewhere in there I suddenly noticed I had a saddle nose!

I had a few fevers and night sweats early on, but not every day. What really got my attention was a painful, nagging cough with bits of blood coming up. When it got bad enough, I went to the pulmonologist who is still treating my Wegs. I was on CTX for over a year, from 125mg down to 50mg, and am now on 10mg. MTX a week and have gone from 60mg. to 10mg. pred. Also, Bactrim DS 3 times a week, and Fosamax, which I was already taking for osteopenia. I don't live anywhere near a specialist center so haven't gone to one. I'm doing well, the lung stuff cleared up fast, the sinus stuff is taking longer but getting better all the time, I do have hearing loss that is probably permanent, so have hearing aids. Haven't had joint pains to speak of since starting treatment.

[Pete]

Yes, I had fevers while in hospital up to about 101 degrees.

Pete

[KathyB]

Looking back, I can see a few issues I tried to address on my own. But honestly, WG hit me like a ton of bricks and was diagnosed relatively quickly (compared to others in our forum). My symptoms included eating problems, acute renal failure, ear popping, and coughing up blood. No fever. But what I've learned from others in our forum is that each of us has had different symptoms and severity! No wonder we find ourselves and others scratching their heads! God bless Weggies!

KB