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Thread: Cold, flu or flare

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    Default Cold, flu or flare

    The last 3-4 days I have been feeling terrible. Sore throat, congested sinuses, run down, loss of appetite, For the last two days I've brought up those big old nasal crusts that remind me of caterpillars or a Dr. Who villain. Today I'm feeling better. More alert but still feel very depleted.
    Every time I feel bad, I start thinking that it is related to Wegs. I try to watch out for those thought patterns but the presence of the big crusts have got me concerned.

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    Default Re: Cold, flu or flare

    Hi John,
    I just went through this. If you refer to the thread ‘moves fast’ You will see where Alysia refers to difference between infection from immune suppressed vs Wegeners flare. Since mine was in my chest I saw my ENT. It was bronchitis, and he said if it had gone into pneumonia that would have been a flare. Fortunately we caught it in time. If you are concerned, go see your ENT ASAP. Both my husband and I now have miserable head colds and we are staying in, not just to take care of ourselves, but to prevent the spread to others. Remember, seniors have a very high probability of fatalities from cold and flu, now couple that with an autoimmune disease and we will not throw caution to the wind.
    Masha

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    Default Re: Cold, flu or flare

    Quote Originally Posted by John S View Post
    The last 3-4 days I have been feeling terrible. Sore throat, congested sinuses, run down, loss of appetite, For the last two days I've brought up those big old nasal crusts that remind me of caterpillars or a Dr. Who villain. Today I'm feeling better. More alert but still feel very depleted.
    Every time I feel bad, I start thinking that it is related to Wegs. I try to watch out for those thought patterns but the presence of the big crusts have got me concerned.
    Hi, John,
    I can see why you are concerned, especially with the nasal crusts... How were you feeling before all this? What were your symptoms when first diagnosed? Not that they'd necessarily be the same for each flare, and everyone is different. I've only had two moderate flares since diagnosis in April, 2011, after getting things under control with treatment. I remember the warning signs as night sweats and a moderate fever, along with extra fatigue and maybe some joint pain. I, too, had the crusts, but not just during flares; it took a few years for those to wind down. So maybe by now you have a better sense of whether this feels like a flare or some other common malady. Actually, one of my flares seemed to be triggered by a cold that was fairly mild but sort of dragged on, and the flare-like feelings eventually crept in. So watch out for that. And I would watch for blood in the crusts, as that is likely a sign of a flare if it appears regularly. It might be time to get your blood checked for inflammation markers and other Wegs related tests . If it's a flare, you might just need a little adjustment in meds.



    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 01-31-2019 at 06:47 PM.
    Anne, dx'ed April 2011

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    Default Re: Cold, flu or flare

    I went to an Urgent Care doctor this morning. He said that my lungs didn't sound like bronchitis, when he looked into my sinus he could see it was inflamed. He recommended Mucinex with Sudafed and prescribed an antibiotic just in case.

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    Default Re: Cold, flu or flare

    I'm glad you got some help. Sometimes the gunk dripping from your sinuses can get into the windpipe and make it sound like asthma or bronchitis. What he prescribed is standard for a sinus infection but my ENT always included a short run of Prednisone as well, which really helped. This was before he or anyone realized I might have Wegs. Another good thing that thins the mucus is NAC, or N-Acetyl-L-Cysteine, an amino acid available at vitamin and supplement shops. It won't say anything on the label about thinning mucus, and it may take a week or two to work, but I find it better than Mucinex, and I take 600mg twice a day. It makes it easier to cough things up so you can breathe better. But it's just something to keep in mind if the stuff you were prescribed doesn't work. Best of luck, and I hope the antibiotics work.

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

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    Default Re: Cold, flu or flare

    All this discussion regarding nasal crusts and flares is too familiar. It appears from this thread that we all have to be wary of the opinions of Vasculitis-ignorant physicians - and from personal experience there are too many of them. If you read the ANCA-related vasculitis literature it becomes apparent that each of our relapses must be accessed individually by an expert. Some of us will begin with only these pesky nasal crusts. FYI, Mucinex makes my nose drip like a faucet instead of helping the situation & worsens my cough. ANCA levels or other disease markers cannot reliably be use as reliable relapse indicators - these are often not elevated once we've been treated with immune suppressants. Anyone can gain access to the Birmingham Vasculitis Activity Score online and enter in current symptoms to gain somewhat of an objective idea. But treating early relapses fast cannot be overemphasized in order to prevent further complications. How many of us visit urgent care & inadequately trained physicians for our care? Too many of us! Not that we can't get colds like anyone else but relapse symptoms change over time & if we think it might be a relapse, it may be. One of the number one important things for our ongoing care is to be seen regularly at a leading known Vasculitis center.

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    Default Re: Cold, flu or flare

    On Jan 23 I had a blood draw and my SED rate was 11. I really think that I am experiencing a flu rather than a flare. I do have some Prednisone handy so I took 5 mg this morning, despite that fact that I hate the stuff.

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    Default Re: Cold, flu or flare

    Unfortunately sed rates don’t reliably go up in relapses (although you would think they would!). Also, take it from experience, to treat ourselves with prednisone is both potentially dangerous and it confuses our clinical picture no end. What is the usual medication you’re treated with for relapses?

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    Default Re: Cold, flu or flare

    I appreciate your input. I saw the rheumatologist at Loyola in Chicago on the same day as my recent blood draw. I'll see my specialist in Cleveland Clinic in March. If my current symptoms continue, Ill be calling both of them.

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    Default Re: Cold, flu or flare

    John,
    Sounds like you are in great hands. Hope the Chicagoland weather warms up for you.
    Masha

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