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Type: Posts; User: Dirty Don

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    Re: 17 Year Old Daughter

    Sorry so young with this disease....BUT, you are at the right place for help. I use Mayo in PHX, and for 8 years they have taken extremely good care of me. Questions should range from how do we make...
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    Re: 20 year old son

    Another WG flare doesn't mean the symptoms will be the same. I had first flare with lungs and sinuses being the main targets...my 2nd flare attacked joints in legs & feet. Go figure! Headaches may be...
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    Re: Need a referral

    Sorry you're in confusion about how to treat WG. It's complex, you've got that right. Avoiding the drugs used to lessen WG effects, both long & short term probably isn't the wisest way to go. IF...
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    Re: ENT in the US who knows GPA well

    Dr. Devyani Lal, ENT at Mayo/Phx is excellent. She even showed me the inside of my sinuses as to where the disease did damage...in COLOR! What!? Anyway, she knows Wegs, and will do what one needs....
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    Rituxan is my new friend

    For those who knew, I had a collision this last summer which resulted in severe bursitis...which then transformed into a flare. First flare 8 years ago was sinuses & lungs, this one affected most of...
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    Re: Second Opinion

    As you should be a concerned mom...seems the doc is ignoring or not knowledgeable enough to recognize obvious concerns. You don't even know if the doc ordered the right tests. Don't know where you're...
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    Re: Fructured Toe

    Just finished a 'pred blast' for severe case of bursitis (I crashed into a golf cart this summer with my BODY! - how dumb was that...this old bod doesn't take hits like that anymore!) at 60mg for 5...
  8. Thread: New Memeber

    by Dirty Don
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    Re: New Memeber

    Welcome Sandy...many many experienced peeps on here with info we can all use. I have neuropathy in left foot, and right hand tips of fingers...neither bother me much cept I trip sometimes cuz of...
  9. Re: Any good wegeners doctors in or near Sun City or Phoenix Arizona?

    Mayo in general does charge a higher rate, about 15% over the Medicare pay back rate if one demands math. It's not a co-pay, just added to bill. If one has secondary insurance, it usually picks up...
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    Re: Strict Dieting

    I lost nearly 60 lbs after my debacle with GPA...docs wanted me to do it, I've never had a flare due to the weight loss. Feel so much better on a daily basis. Best to you.
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    Re: Pred Taper Completed

    Have used pred blasts on various issues, and usually worked. Another hint: stay in the fairway!!! LOL
  12. Re: New member. 57 years old. expecting the best

    Welcome AngieB, you're on the right track for sure...just a tough track to be on! Much of my WG damage is in the sinuses. Therefore, when the prednisone helped destroy the last of my teeth, I needed...
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    Re: Newly diagnosed-happy to be here!

    Linda, welcome to the greatest place a Weggie can be for advice, general knowledge, and all kinds of help. Many experienced and astute peeps to help with all kinds of questions. Glad you & doc caught...
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    Re: Seeking recommendations in Oregon

    Hi mandolin, OHSU in Portland has an eye doc who specializes in GPA. Also, OHSU has opened a small vasculitis clinic recently on the campus. Best to you...not the clinic, I mean the Oregon...
  15. Re: Hospitalized currently praying for a miracle

    Just for peace of mind, she is comfortable as she can be. I was intubated & unconscious for 10 days plus another 7 in ICU & recovery. Never knew a thing...seriously. The question is how long do the...
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    Howard, welcome to THE community! LOL, most of us...

    Howard, welcome to THE community! LOL, most of us would rather be somewhere else, but we're all together now in this. GPA attacked my sinuses & lungs. All came clear due to massive amounts of...
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    Doses of folic acid (OTC) will curb hair loss....

    Doses of folic acid (OTC) will curb hair loss. Best to you on the RTX.
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    Keep swinging...it's all that matters!

    Keep swinging...it's all that matters!
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    Hi Rachel, your pred experience is pretty common....

    Hi Rachel, your pred experience is pretty common. It's not easy for many people to wean off pred. Took me a couple of long efforts to make it. As your 'other' choice of meds kicks in, the pred will...
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    Welcome Nixie, this is the place to be for...

    Welcome Nixie, this is the place to be for comfort, understanding, and experiential info. Having skin issues seems common in WG. I had blotches on my arms & legs...all went away with proper meds &...
  21. Thread: sadness

    by Dirty Don
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    I already gave up...once...kids, wife, & nurses...

    I already gave up...once...kids, wife, & nurses talked me out of it. The 'new normal' is really better than not having anything...waves of sadness wash wild sometimes, one has to control & divert...
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    I believe there's a misconception about the...

    I believe there's a misconception about the 'highs' produced by cannabis. Those peeps looking for the CBD 'high' will always get some THC...the actual 'high' IS the relaxation & anti-inflammatory...
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    Bemused is good, operator error most...

    Bemused is good, operator error most likely...keep that heart tickin'!
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    Deb, pills are typically packed in 'something'...

    Deb, pills are typically packed in 'something' such as calcium and sundry items not associated w/ the actual drug. Usually, the cheaper the item, the more weird the packing. One will get the effects...
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    Don't know if this is pertinent to your recent...

    Don't know if this is pertinent to your recent 'setback', but I was at Mayo a couple of weeks ago for what I considered an important appt. For 2 days prior and a week after, the crusty nose & some...
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