Does this sound like Wegener's Granulomatosis?

[alessa]

For over 5 years I have been having a mysterious symptom. I would at times after exercising, working or talking get an odd, slightly painful sensation of something in my throat. I would then cough up a crust. I used to think this was just phlegm, but since the crust at times has some blood streaks, I recently started thinking that these crusts actually come from my nose since the crusts in my nose have the same shape, color and occasional blood streaks. I saw my doctor 3 years ago, explaining these odd crusty things being coughed up and he told me it was just an allergy. So got zyrtec, yet this never really cleared up and now everyday I cough a couple of these crusty things a day. I did loads of searches and just found a case of somebody coughing up crusts that was diagnosed with wegener's which is a disease I never heard about before. Well, this person had some sort of complication, something like stenotic trachea and ended up dying from swallowing this crust and not being able to breath, so now I am a bit scared! Does anybody with this condition cough up nasal crusts? Sorry for being graphic, but I gave up seeing doctors because they all seem to say it's either a sinus problem or allergies. Perhaps I should mention this condition next time?

[Mikek]

Jenny's had these bloody scabs come up her throat for about twenty years but never more than a couple/week. Always more prevalent in Winter, maybe because of the smoke from the wood heater.

[Alysia]

Hi allessa and welcome.
if you suspect WG you should check it seriously. find a good reumatologist to consult with. there are some tests you have to do.
do you have any other symptoms?
I hope it will be something else. easier.
but for your well being it worth checking.
good luck and update us.

[annekat]

Yes, people with Wegeners cough up crusts, bloody or otherwise, quite often, or they come out of our noses. That is if we have sinus/nasal involvement, which a great many of us do. That isn't to say you can't have this crust problem without having WG, but I agree you should definitely get it checked out. If you keep reading the forum and search the archives, you'll know what other symptoms of WG to watch out for.

[Dirty Don]

Alessa, I had similar experiences in that my docs sent me to an allergist, every time! Examined my ears, checked my throat, blah blah blah...this was years before my dx. Once dxed, all that has cleared up for the most part due to the correct drugs and protocols and dxing the WG properly. Who knows how many years I've had it, but it's been longer than the 2 years since my dx, that's for sure. Please find a good rheumy, preferably one who has WG experience, and is willing to consult with those who have experience if he/she does not have the 'real' tools! Honestly, everyday docs don't get WG...they read from a book, and hope...get to a WG doc soon. Best to you.

[drz]

Mine is almost identical story to above statements. I had nasal crusting and bleeding for a couple years before the next symptoms appeared. I also saw several ENT doctors who erroneously attributed to dry winter air. The last one recommended a biopsy if it didn't clear up in spring but I came down with other severe symptoms that eventually lead to my hospitalization and correct diagnosis.

[annekat]

Mine is almost identical story to above statements. I had nasal crusting and bleeding for a couple years before the next symptoms appeared. I also saw several ENT doctors who erroneously attributed to dry winter air. The last one recommended a biopsy if it didn't clear up in spring but I came down with other severe symptoms that eventually lead to my hospitalization and correct diagnosis. I don't see what would have been so hard about doing a nasal biopsy instead of waiting for spring and it possibly clearing up. My nasal biopsy was done on the spur of the moment, was not a big deal, and ended up providing me with a dx. True, nasal biopsies are not always conclusive, but if that was your only symptom, then it would have been the only place to get one. Then maybe they could have dx'ed and treated you before you got severely ill and hospitalized.

I'm also one of the ones whose symptoms went on for over two years before dx, and were attributed to allergies and recurring sinus infections. I didn't get much dry crusting or blood, though I got some, but my doc had started me on the sinus rinses and I couldn't believe the size of some of the chunks that would occasionally come out. That still happens, of course, because my sinuses have been permanently damaged and I guess will always produce extra mucus. Although it has tapered off some as I feel better overall.

[Barry Forshaw]

I think you should certainly visit your doctor to get it checked out. Without other symptoms of Wegener's though, it's unlikely to be the first thing that the doctor considers.

My wife had a constantly runny nose for months leading up to her diagnosis but it was only when her airways started shutting down did Wegener's become an option.

[annekat]

I think you should certainly visit your doctor to get it checked out. Without other symptoms of Wegener's though, it's unlikely to be the first thing that the doctor considers.

My wife had a constantly runny nose for months leading up to her diagnosis but it was only when her airways started shutting down did Wegener's become an option.And there are lots of people with runny noses, allergies, etc., so I guess it's understandable that the docs don't consider Wegs right away. I think if someone has an uncharacteristic ear infection followed by months of recurring sinus infections, as I did, and as is similar to what others on here went through, then Wegs should be on their mind a little sooner than it was. It took lung involvement for me to get a dx, and even then, I almost had to fight for it! My pulmonologist was reluctant to consider Wegs, but my saddle nose appeared while he was on vacation, and I got a quick appt. with my ENT for a biopsy. Of the course, the ENT was the one who should have thought of Wegs all those months, and he was of course apologetic, yet at the same time a little excited that we'd solved the mystery of what my problem was!

[Barry Forshaw]

Given how crucial an early diagnosis of Wegener's Disease can be it should definitely be on the doctor's mind from the outset. From what I've seen it seems to be a common story that sufferer's have to fight for their diagnosis and that's not right!

[annekat]

Given how crucial an early diagnosis of Wegener's Disease can be it should definitely be on the doctor's mind from the outset. From what I've seen it seems to be a common story that sufferer's have to fight for their diagnosis and that's not right! Yes, a very common story. It seems to me than anyone with ongoing and uncharacteristic nasal, sinus, ear problems should be tested for WG after a few months if not sooner. For lungs, I'd say the same thing, like if someone has constant asthma and coughing that can't be pinpointed to a certain cause. In my case the sinus stuff was what dragged on and on and the lung stuff was what became alarming fast enough to get someone's attention so that WG was suggested as a possibility. The same with joint pain, I'd guess, but as for kidney involvement, I don't know enough about it to know what any early warning signs would be. I guess that's what's good about most of us having more than one type of involvement, it increases the chances that someone will make the connection.

It would seem that WG and Vasculitis in general are gaining a bit more attention these days as more people are diagnosed. I hope this will lead to more people getting an earlier dx.