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A couple of days after my appt with the pulmonologist, my ent doc called me and decided to put me on another antibiotic for 7 days. He said the wegener's is not "eating" away any more to my sinuses but they are inflamed pretty bad. I was the one who asked him if it was "eating" away any more to cartilage in my nose and he said no. Just so you know he didn't actually say that.
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Brooke do you take Bactrim DS three times a week?
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I take bactrim on a lower dose every day.
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I see my Pulmo and Rheumy on Wednesday, June 2.
Any tips would be greatly appreciated.
I know that I am going to insist that Dr. Gary Hoffman or another Wegs Specialist be part of our team. I am going to insist that he/she gets copies of every test done and that they sign off on everything - so to speak, like getting their final approval.
I will also insist that any future CT scans have no contrast media.
I am also going to dicuss going off of Alendronate. I feel that the risks outweigh the benefits.
I am also going to discuss tapering my pred 1mg per month. Right now I am on 10mg.
I will also discuss having my plasma blood levels checked for Cellcept to see how much is being absorbed. Has anyone else had this done?
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You go, Phil! Armed with your lists.
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Thanks Lola.
I forgot to add that I feel like my airway has been tightening up lately. I also see my ENT on June 10.
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Phil, sounds like your wegeners is very active and they will not lower your predniosne, I had a small flare and my ENT told me to increase it back up to 10 mg of prednisone and I was taking 5 mg of prednisone at the time. The rest of other stuff you listed, good for you.
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Phil,
Sounds like you have a good plan and good questions. Good luck at your appointment and let us know how it goes!
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Hey Phil, I'm really glad to see you taking control of your care. Good for you!
I agree with Elephant about the pred thing, but everything else sounds great. I don't know about measuring blood CC levels. That's a good idea to ask about it.
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I just got an e-mail from my Rheumy.
She says:
I heard back from Dr. Hoffman and he thinks you have a secondary infection and if we use the Rituxan we need to prove recurrence - with a boipsy for proof - need ENT assessment as well then.
That sounds promissing.
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