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Thread: Chronic sinus infections, bronchitis, and nasal rinses.

  1. #91
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    Default Re: Chronic sinus infections, bronchitis, and nasal rinses.

    Quote Originally Posted by annekat View Post
    Helen, it just really seems you need to get out of whatever medical system or network you are in and into another one. I can't imagine a worse ENT and you should be able to get a better one just about anywhere, whether listed on the VF site or not. If you live near a university teaching hospital or medical center, they are known for having good doctors who schedule appointments with outpatients and will have plenty of other doctors available in the other specialties that apply to your case, from which a "team" may be formed. I don't do this myself, just know people who do, and have heard the suggestion many times. I don't understand your not being able to use your expensive insurance to have better choices of whom to see. Do you need a new PCP who is more willing to make new referrals? I don't think it is necessary to already be diagnosed in order to see a rheumatologist with WG experience, who knows how to interpret your symptoms, read your blood tests, and can refer you to a good ENT, pulmonologist, or whatever you need. Your ENTs statement about the red or green crusts should be a huge red flag to anyone with WG knowledge. I would not even bother going to this guy again. And the inability to have access to your images is a travesty that I don't understand.

    No, a nasal biopsy is not that big of a deal, mine was done right on the spot, unscheduled, in the doctor's chair, after I made my own appointment with the ENT I'd been seeing, prompted by the sudden appearance of my saddle nose, and having just been in the hospital overnight with new lung issues which suggested WG. He and his nurse stayed late to get the procedure done, a local and/or topical anesthetic was used, it was not without pain and there was bleeding, and I think there was a small cut made for a sample as well as scrapings from the hole in the bony part of my collapsed septum. People will say nasal biopsies are unreliable and inconclusive, but it got me a dx, and the discomfort and moderate amount of pain was well worth it. It sure can't hurt to try. I ended up being treated by my pulmonologist/internist, not a WG specialist but knew what the treatments were, and they worked. I never even had a rheumy until recently when my pulmy retired, and I got a new pulmy, too. Still see the old ENT occasionally, mainly for hearing issues and vertigo. So, though it is best to have a knowledgeable rheumy to oversee your care, not everyone does, if they have other good docs who are able to dx and willing to treat. Also, it's not unheard of for a very knowledgeable rheumy to go ahead and treat based on your symptoms and blood work alone. I don't understand docs who are so resistant to helping you get second opinions and a dx and treatment. Good luck. I hope others have some input here.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Hi Helen, I take it you have not medically been diagnosed with WG? The way these people have treated you makes me so sad & worries for you. With your insurance do you need a referral? If you do not I would go to a different health care system (where I am we have SSM, BJC, Mercy, ect) & try that route. I would also call your insurance company and make a complaint about this ENT. They have nurses & other support staff that can help you. I hope all is well! My thoughts are with you!
    Natty


    Sent from my iPhone using Tapatalk

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  3. #92
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    Default Re: Chronic sinus infections, bronchitis, and nasal rinses.

    That is an excellent article from a very credible source. I note that the doctor is generally not in favor of nasal biopsy except in very limited circumstances. I know others have different experiences, but I will say again that a biopsy is often not diagnostic and has more risk than benefit. In my case the biopsied nasal passage has irreparable damage, worsening my long term outcome, and there was no reason to do it since the serology was already convincing for a GPA diagnosis. Possibly the question to ask when considering a biopsy would be, how would my treatment differ if I had a biopsy? I wish I had asked that question, since I'm positive I still would have received the standard GPA protocol.

    Regarding mupirocin (bactroban) I use it dissolved into a basic saline rinse, but only occasionally. I will have to look into the NAC, as the post nasal crap is the bane of my existence these days.

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  5. #93
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    Default Re: Chronic sinus infections, bronchitis, and nasal rinses.

    Quote Originally Posted by Alaskatom View Post
    That is an excellent article from a very credible source. I note that the doctor is generally not in favor of nasal biopsy except in very limited circumstances. I know others have different experiences, but I will say again that a biopsy is often not diagnostic and has more risk than benefit. In my case the biopsied nasal passage has irreparable damage, worsening my long term outcome, and there was no reason to do it since the serology was already convincing for a GPA diagnosis. Possibly the question to ask when considering a biopsy would be, how would my treatment differ if I had a biopsy? I wish I had asked that question, since I'm positive I still would have received the standard GPA protocol.

    Regarding mupirocin (bactroban) I use it dissolved into a basic saline rinse, but only occasionally. I will have to look into the NAC, as the post nasal crap is the bane of my existence these days.
    I think it's great if they can get enough info for a dx without a biopsy. In my case, I was lucky, it went well, was easy, and yielded results. Others might not be so lucky. Also, there might not be any other good spot from which to take a biopsy if nasal and sinus is the only involvement. A very experienced WG doc would be the best to judge whether a biopsy is needed for a dx, I'd think. It would be nice if biopsies became a thing of the past for diagnosing WG.

    My rheumy drew a blank when I mentioned NAC but my new pulmy is in favor of it. Give it a couple weeks, maybe less, for it to noticeably help. I just get a lot less of the nagging cough from post nasal drip and less having to explain to people that I don't have a cold. And when I do cough, it is more productive.

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    Anne, dx'ed April 2011

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  7. #94
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    Default Re: Chronic sinus infections, bronchitis, and nasal rinses.

    I discussed NAC with my internist and he recommended I stay with the the generic Muccinex since there are risks of side effects with NAC. Read about them before you try it.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Chronic sinus infections, bronchitis, and nasal rinses.

    Quote Originally Posted by drz View Post
    I discussed NAC with my internist and he recommended I stay with the the generic Muccinex since there are risks of side effects with NAC. Read about them before you try it.
    Always a good idea. Here's WebMD's list of uses, possible benefits, and possible risks. I haven't experienced any of the possible side effects. But this is the only place I looked.
    https://www.m.webmd.com/vitamins/ai/...cetyl-cysteine

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default Re: Chronic sinus infections, bronchitis, and nasal rinses.

    I have used the Mupirocin (Bactroban )in my nasal rinse. It's easy to do it yourself. To 1 liter ( or 1 gallon) of distilled water I add first 4 packets of saline, then 1/2 tube the mupirocin. I find if you let it sit a couple of hours it dissolves on its own into the saline water. Then just shake well. I fill a clean coffee mug with the solution and warm in the microwave for 30 seconds, do the rinse. My dr. and pharmacist said the warming was fine.
    Well, that worked well for me awhile, then after 6 months or so it wasn't working as well.
    My ENT retired, I got a new one. After some research she had me try Gentimicin in my rinse instead. It's prescribed as an injectible. I have to pry out the little grey port and pour it in my saline bottle. I let it sit a little, and shake well. My dr. said I can use it when I need to, which I only do when I've got trouble.
    The theory is that my sinuses have seldom been free of infection. I had 2 sinus surgeries 10 years apart due to sinuses being so infected they sealed shut. Latest ENT said I'm lucky that those surgeries did not cause deformities to my sinuses because of the Weg.
    I've had life long sinus issues. When I was a kid the dr. would paint my sinuses with some horrible tasting stuff and put me under a heat lamp. I was the kid running around the neighborhood with a kleenex stuck up my sleeve.
    Well, it's late. Time to stop.
    Good night all.

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  12. #97
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    Default Re: Chronic sinus infections, bronchitis, and nasal rinses.

    Wegs has eroded away all the parts of my sinuses that collect mucus, and the turbinates, so that my nasal cavity is one big hole. There is still mucus produced around the top of my nose, but not as much as before. The good news is that I will never have sinus infections again, according to my ENT, because there's no place for mucus and bacteria to collect. I still do saline rinses. So it's sort of like the sinuses and turbinates did surgery on themselves, with help from Wegs. I'm not saying it's a good thing for one's sinuses to erode away, and every case is different, but it hasn't been a problem for me, except for one thing: I have double vision, and they did an MRI and think it's because of erosion into the bottom part of the eye socket, which is above the maxillary sinuses and supports the eyes. I hope to look into this some more.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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