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Old 11-16-2012, 11:45 PM   #1
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Scared nose problem is really Wegeners Granulomatosis

Have seen 3 ENT's because of crusting and soreness in nostrils. First one said to use Bacitracin for a year - did culture and had moderate staph and took Keflex for 10 days. Five days later did another culture and came back negative.

Second ENT said it was from a very dry nose and to keep it mosturized with saline spray and then saline gel many times a day and use Medihoney at nite. No improvement, in fact worse.

3rd ENT thnks I have Wegener Granulomatosis which is a death sentence from what I read. A vascular autoimmune disease. Did some blood tests put they will take a while and said he also would need to biopy. In the meantime, I am using Vaseline or Bacitracin and a lot of saline spray and gel and stay hydrated. Since Wegener Granulomatosis seems to be a death sentence I am scared. Apparently it starts in the upper respiratory and attacks the lungs and the kidneys and you die of renal failure. Doc said can take combo Prednisone (but I can't as my osteoporosis is bad) and a chemo type drug with toxic side effects that can kill you also (lymphoma, kidney failure, etc.)

Is there anyone out there with this problem. Please help.

 
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Old 11-23-2012, 09:52 PM   #2
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Re: Scared nose problem is really Wegeners Granulomatosis

Quote:
Originally Posted by suggi View Post
Have seen 3 ENT's because of crusting and soreness in nostrils. First one said to use Bacitracin for a year - did culture and had moderate staph and took Keflex for 10 days. Five days later did another culture and came back negative.

Second ENT said it was from a very dry nose and to keep it mosturized with saline spray and then saline gel many times a day and use Medihoney at nite. No improvement, in fact worse.

3rd ENT thnks I have Wegener Granulomatosis which is a death sentence from what I read. A vascular autoimmune disease. Did some blood tests put they will take a while and said he also would need to biopy. In the meantime, I am using Vaseline or Bacitracin and a lot of saline spray and gel and stay hydrated. Since Wegener Granulomatosis seems to be a death sentence I am scared. Apparently it starts in the upper respiratory and attacks the lungs and the kidneys and you die of renal failure. Doc said can take combo Prednisone (but I can't as my osteoporosis is bad) and a chemo type drug with toxic side effects that can kill you also (lymphoma, kidney failure, etc.)

Is there anyone out there with this problem. Please help.

 
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Old 11-23-2012, 10:05 PM   #3
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Re: Scared nose problem is really Wegeners Granulomatosis

I just want to tell you to relax and not worry too much. I had the same reaction when I was first diagnosed with Vasculitis. Wegner's is absolutely manageable and you would lead a normal life. But yes close monitoring of this disease is required. I have been sufferring from the same problem ( mine included nose-bleeds) for the last one year.
I stated taking medicine since July this year. My nose bleeds stopped instantly and so did my joint pains. My Wegners is in remission now and I am on a maintenance dose of steroids and methotrixate. I am absolutely fine. So don't panic and think positive.

 
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Old 05-22-2013, 08:37 AM   #4
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Re: Scared nose problem is really Wegeners Granulomatosis

Did you ever get your results back and was it Wegener's? My Rheumie is thinking I might have Wegener's and was wondering what symptoms others experienced with it. I am fatigued all the time, Have the crusting in my nose and now ENT says I have a perforated septum. I have vasculitus that showed up on my legs as petechia. But so far no kidney or lung problems???
I'm so tired of suffering and not knowing what is wrong with me. Thanks,
but4grace

 
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