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Thread: Sudden Coughs

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    Default Sudden Coughs

    Normally I don't get a lot of coughing going on but lately it's been a problem. Yesterday I coughed up a little bit of blood before coming into work. Is this normal with Wegs? I'm currently at work now but the good thing is they're very accommodating now that I have a confirmed diagnosis in place. I thought my hip replacement from the damage from prednisone was the end of it all and now it looks like it's only the beginning. Next week is my 40th birthday and what I want for my birthday is for my body to leave me alone! LOL Any suggestions what to do about this?

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    LOL, don't know what to do about your body leaving you alone, but I empathize some days for sure! I've been thru and still have the WG cough...for me, it seems to evolve...was very disruptive and easily agitated at first, now has evolved to a lesser state, but, nonetheless, is still there. Seems to 'hack' in different ways each time it comes back. Coughing up blood indicates a still active WG...mine was blood from lungs and stringy blood from the nose (I know I know...don't think about it!), as the mtx and the pred have done their jobs and the WG is in medical remission, I no longer have the blood symptoms, but am extremely aware of them each time I cough or blow my nose...always on guard as it was one of my more obvious symptoms...sheesh!

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    So you can be in remission and getting the same issues prior to diagnosis and treatment? How can I tell if I relapsed or in remission?? Last time I complained to my specialist was back in February of this year. She did say, "You're not flaring from what I've gathered and you still seem to be in remission!" When is a flare a real flare compared to when my body's playing dirty tricks on me? At first I thought her answer indicated that she didn't believe a word I was saying.

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    Question for you, Chadwyck: Is the blood bright red (meaning fresh), or kind of rusty (meaning old blood)? In both cases, I would call your doctor immediately, but even faster if it is fresh blood. Maybe go straight to the emergency entrance. Sorry about your birthday wishes, but pulmonary hemorrhaging is most definitely not a good sign, and it can get out of control very fast. It also may mean that your kidneys are also under attack, though the evidence for this is harder to spot without blood tests. I think this is pretty important.

    Al

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    Quote Originally Posted by Chadwyck View Post
    Normally I don't get a lot of coughing going on but lately it's been a problem. Yesterday I coughed up a little bit of blood before coming into work. Is this normal with Wegs? I'm currently at work now but the good thing is they're very accommodating now that I have a confirmed diagnosis in place. I thought my hip replacement from the damage from prednisone was the end of it all and now it looks like it's only the beginning. Next week is my 40th birthday and what I want for my birthday is for my body to leave me alone! LOL Any suggestions what to do about this?

    Have you reported the blood to your treating doctor? Has it happened again? If you are bleeding in the lungs that is very serious. If you swallowed a drop of blood from some bleed from sinus issues and coughed it up that would be much less serious if you often have blood in sinuses. I would want to know where the blood came from and also get my lab work done to make sure nothing else is going on that requires some extra immediate attention. Blood is not a good sign and usually means something needs more attention.
    Last edited by drz; 06-13-2012 at 11:49 AM.

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    Do you have a history of pulmonary hemorrhage or lung nodules with Wegs? If so, particularly with a history of hemorrhage, ANY coughed up blood must be presumed to be Wegs until proven otherwise.

    In 2009 I started coughing up blood. WAY more than I had coughed up when my lungs were massively hemorrhaging (only a couple tiny specks a day!). I was admitted to JHU for diagnosis but Dr Seo couldn't treat me as an inpatient. A bronchioscopy showed "old blood" and not much of it. I didn't "look sick enough" even though I was so weak I couldn't lift my head. Docs couldn't agree on whether it was Wegs or not so I was discharged with a dx of bronchitis. Dr Seo found out the next day and was really upset. Called me in immediately and said ANY blood in the lungs is Wegs because of my prior history. It was a severe flare.

    Flares can and do happen at any time. I'd only had increasing weakness for a few months prior to suddenly coughing up giant gobs of blood one morning. No other signs/symptoms.

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    Sangye, I only had one episode of a lung problem as far as Wegener's is concerned. I went in for a DCR (eye surgery but can't think of the meaning of the acronym) and the opthamologist who did the surgery said he heard an alarming sound of my breathing in the recovery room. He also told my mom that he's seen nasal crusting like mine in people with different types of vasculitis. It was from that point, I realized there were many types of vasculitis and on my medical records he indicated that I was showing signs of Wegener's. So after one year of constant testing, coughing up blood was never an issue. This is why I didn't get alarmed by it, however, I've coughed very hard all night considering I wasn't feeling bad before bed. I will definitely mention it to my specialist. What I need to know is when to speak up and when to shut up.... most of the time I complain about something, it turns out to be nothing, still in remission and no signs of flares.

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    When you are newly diagnosed, it's normal to have trouble differentiating between Wegs and other things. While you're in that learning period (which can take several years) it's best to be on the safe side and report changes to your Wegs doc. S/he will understand and over time can help educate you on how to tell the difference. Dr Seo has done a great job with me. I came to him a terrified mess, totally unable to tell what was going on in my body. I'd had tons of complications, had refractory (unresponsive to treatment) Wegs and a number of docs who didn't take me seriously or educate me about what to expect. There was a long period of time where neither Dr Seo nor I could tell in regards to several signs/symptoms. We were both in the dark. It was only through me keeping daily records of symptoms and him seeing me over time that we could sort out some of the things that aren't really changing over time-- ie, not worsening or improving, but stable.

    It also helps to learn which are signs/symptoms of severe disease activity. Coughing up blood is one. Alveolar hemorrhage is considered severe activity and must be addressed immediately. Returning night sweats are another. Unless you're on pred, night sweats are a huge red flag.

    Please call your Wegs doc today.

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    I don't think many docs treating weggies would be upset with the occasional false alarm. It could be nothing, but...

    Pete

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    Ok, how about this.... no harsh coughing since the last 48 hous, but I can still taste blood in my mouth the odd time. Would that be a nasal problem or lung problem?? This confuses me a lot. Last time I coughed like crazy was during the night last night and my coughing woke me up but I went back to sleep minutes after. I was also sweating in the air conditioned room during the cough attack which I thought was strange.

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