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I was diagnosed in May 2012. At first I was on 80 mg prednisone, and I was instructed to taper down 10 mg every two weeks until I got to 20. I then held at 20 for several months, while we dealt...

Going from 0.5 mg to nothing...not 5 mg to nothing. Tapered at 0.5 mg drops over several months.

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Have been weaning myself off of Prednisone for several months now. Just met with my doctor this afternoon...and beginning tomorrow I will go from .5 mg every other day to totally off of it.

Wish...

O positive

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Don't know how old you are...could it be hot flashes? I also have noticed that I tend to have more trouble since my diagnosis in 2012 with maintaining a comfortable body temperature. Often am too...

Seem a long time to go between tests, especially considering your recent diagnosis. Glad you were able to get Rituxan

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For the first couple years I had weekly labs (CBC, urine sample, serum creatinine), but my main Dr is a nephrologist and was closely monitoring my kidney function (which is doing pretty well these...

With me they gave me drugs to relax me and then numbed the area where they made the incision. I was instructed to hold my breath a couple times, then I'd hear a little click...and next thing I knew...

I too was switched off of Imuran and put on Cellcept. My Dr also has me taking protonix to help with the acid reflux. Have had two kidney biopsies since being diagnosed in 2012, and both times didn't...

GPA not WPA (must have started to type Wegener's and switched to GPA halfway through? Haven't had my coffee yet...

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In 1991 I came down with a fever if unknown origin that lasted 6 weeks and finally went away on its own. But from that time forward I would get these little sores in my nose that would come and go...

...and a very happy - and healthy - new year for all.

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Sometimes we feel as though the mountain that is Wegener's is insurmountable, but with luck and perseverance it is possible to to fight our way to the summit. Cheering you on as you continue kicking...

Each of us "hike our own hike."

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I, too, cannot metabolize AZA so the Dr. had me on CellCept until starting me on Rituxan, due to my recent flare.

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Coconut water is the juice inside of young coconuts. It is higher in potassium than bananas, lower in sugar, and has no fat. So, it isn't the same thing as coconut oil. Coconut oil is derived from...

My nephrologist has me taking prescription potassium to help keep my levels in the normal range, even though I'm CKD 3. For some reason my body has trouble holding onto potassium and without the...

Got cut off!

Sinus infection, but they never really knew what was going on. It took nearly dying for me to get a diagnosis. Funny thing too, every time I was put on short term prednisone for...

In 1992 I had a fever of unknown origin along with headache, night sweats, aching from head to toe, and a weird tightness in my throat. Every test came back negative. After six weeks I suddenly...

Four weeks ago I mowed our entire yard (3/4 acre of ups and downs!) with a push mower; yesterday I did well to get a load of laundry done.

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My two-year affair with remission is officially on hold. Thankfully I've already been OK'd for a new round of Rituxan, and am hopeful that my remission will see fit to return soon. Was nice to...

I'm also from Indiana (I split my time between Bloomington, where I work at Indiana University, and French Lick in Southern Indiana, where my husband and I have our home).

SpaceflightAddict - Springer to Damascus? (Trailname = Toccoah, Springer to Dalton, MA 2001)

I'm brand new to this site, diagnosed with WG May 2012, holding my own. Will post my story soon, but...