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  1. I couldn't find a decent WG doc in the DFW...

    I couldn't find a decent WG doc in the DFW metroplex. Had to go to Cleveland Clinic to get diagnosed and treated properly. They are great there. Except for the transportation, the cost is the same...
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    I couldn't take MTX either. Cellcept worked...

    I couldn't take MTX either. Cellcept worked better for me but had a lot of side effects--posted elsewhere above. RTX is doing the job now without Cellcept so far. I feel better.
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    My experience with Cellcept sounds a lot like...

    My experience with Cellcept sounds a lot like yours. All the other Wg meds made me even sicker. This was all that was left. I had all your symptoms. The diarrhea was the worst I think. Half my...
  4. 1. How long do you think you had Wegener's before...

    1. How long do you think you had Wegener's before you were diagnosed. I was very sick for about 5 months prior to my diagnosis ( back in 2010), but I suspect that the onset might have been even...
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    Hey, Lisa! Thanks for reaching out. In December...

    Hey, Lisa! Thanks for reaching out. In December I was picking songs for my funeral, LOL. Really. Now I feel the best I've felt in a long time. My doc at CC, Villa-Forte, let me quit taking...
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    My primary care physician in Fort Worth who sees...

    My primary care physician in Fort Worth who sees me for non-WG issues says he would rather not risk making treatment decisions on WG related matters. Only problem with this is that when I have...
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    Well flying to a WG center like Cleveland Clinic...

    Well flying to a WG center like Cleveland Clinic is an extra cost, but so is getting sicker or losing an organ due to someone's lack of experience. Once I was diagnosed and a treatment regimen...
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    Maybe your insurance would help with...

    Maybe your insurance would help with transportation if there is no WG qualified doctor in your area? Doesn't cost to ask I guess.
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    Who do you see at the Cleveland Clinic? I see...

    Who do you see at the Cleveland Clinic? I see Dr. Alexandra Villa-Forte. She has/had hundreds of Wegener's patients. I've had such bad experiences with rheumatologists and other specialists that...
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    That's pretty scary, Shawn. Only three WG...

    That's pretty scary, Shawn. Only three WG patients? You should really consider seeking out someone who sees many WG patients as your primary quarterback for treatment ongoing. Even better is...
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    Since I was diagnosed with WG, my doctor told me...

    Since I was diagnosed with WG, my doctor told me not to take the flu vaccine any more. If you have a WG doc they will probably tell you the same. If you ask someone not familiar with WG, they may...
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    Hope for the new year.

    I've been quiet for awhile. Feeling sort of OK most days, but not really 100%. I've had another blood clot--this time in the left thigh, but it wasn't as bad as the one I had last March in my right...
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    Well, I'm doing pretty good lately. Not too many...

    Well, I'm doing pretty good lately. Not too many symptoms. My shortness of breath has improved and I feel pretty good most days, though I tire easily. I'm down to 12MG pred for the second time...
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    I'm just going to 15 tonight after my flareup in...

    I'm just going to 15 tonight after my flareup in August. It has taken this long to get back down to where i was. I'm doing ok on the Cellcept so far. I can't have any more RTX for at least six...
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    We will both in the hospital on Thurs it appears....

    We will both in the hospital on Thurs it appears. I'll remember you and be praying. Maybe we'll both we celebrating successful operations by the end of the week.
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    Thanks, Phil. We'll know soon. Just praying it...

    Thanks, Phil. We'll know soon. Just praying it is an endoscopic procedure, not through the neck. I really dread waking up with a feeding tube out my nose for week or more.
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    Thanks, Rose. I'm feeling positive and...

    Thanks, Rose. I'm feeling positive and optimistic about the expected outcome. My surgeon is supposed to be the best at this.
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    I'm having my throat operated on Thursday the...

    I'm having my throat operated on Thursday the 29th to repair or remove the Zenker. Won't know till I wake up if it was endoscopic or not. Doc says 50-50. Through the side of the neck is a much...
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    No. Didn't do well on those. They all made me...

    No. Didn't do well on those. They all made me violently ill. I'm walking 2 miles each morning now--gasping all the way, but walking.. Trying to increase my stamina for the cruise excursions. So...
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    Week two of the Cellcept. No problems yet. I've...

    Week two of the Cellcept. No problems yet. I've begun taking short morning walks again this week. This is the first time I've been able to walk in about a year. I'm still very short of breath and...
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    I'm taking 500 mg twice a day to start with. ...

    I'm taking 500 mg twice a day to start with. Just started on 8/20/11. I think the plan is to increase the dose after a few weeks. I have to take a blood test at the end of two weeks to see how it...
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    Good visit at Cleveland Clinic today with Dr....

    Good visit at Cleveland Clinic today with Dr. Villa Forte. She is the greatest! New chemo for awhile longer though--Cellcept. Don't know much about it yet. I'll start tapering off the steroids...
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    Very interesting. And it is so hard to pin down...

    Very interesting. And it is so hard to pin down cause and effect.
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    I'm not sure. I'm definitely feeling the effects...

    I'm not sure. I'm definitely feeling the effects of cutting back. I run out of gas during the afternoon. I take mine at breakfast. I haven't lost any weight yet, but several people said my face...
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    Thanks, Aunnie. I am still weak and SOB, but...

    Thanks, Aunnie. I am still weak and SOB, but based on what you've said, I will ask my cardiologist. Seeing him next week. I passed my nuclear stress test and the other tests, like you did. I...
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