Snorting

[mrtmeo]

I know my mom's MPA is not exactly the same as Weg's, but her sinus issues were her beginning symptom.
She has had a cough only at nights before treatment.
After treatment, she would cough 24/7 for a couple months and it would completely stop for a week and a half.
Then, she had the cough with mucus in her throat for 1.5 months and it went away completely for 1.5 weeks.
Now, she rarely coughs, but has been snorting over a month.

Has anyone else had anything like this?

[annekat]

Can't say I have, but with Wegs, there are a variety of ways it can affect the whole nasal cavity, sinuses, ears, etc., and I'd assume it would be the same with MPA, though I don't know much about it at all. So by snorting, I guess you mean a noise from the nose. If things have changed in shape in there, I guess that could be a factor, or maybe if mucus is collecting and solidifying in certain areas. I know that since having Wegs and especially since dx, my sneezes have changed. They are more explosive and much less easy to control. And my whole Wegs experience starting with 2.5 years before dx has been a parade of changing symptoms and effects, voice problems, etc. It would be interesting to see in there and see how things have changed over time since the beginning; in my case, it is a lot. I don't know if with MPA there is as much necrosis, erosion of bones and tissue, etc., since, as I understand it, there are no granulomas, which seem to cause a lot of the destruction by cutting off oxygen. But I would imagine there are ways that damage is done with MPA, too. I hope someone has a better understanding of all this, and what might cause the snorting, than I do.

[Dirty Don]

I coughed violently for about a year, then it began subsiding (already on mtx and pred at time) to a sometimes cough. Since most of the permanent damage is in my sinuses, I still collect mucous & cough at times, and even snort as it were, especially when sleeping. At 3 years+, I still sneeze a lot, still have mucous collection, very little cough, and some snorting. Part of the disease and its damages I guess. Best to you both as always.

[mrtmeo]

Hi All,
I know MPA doesn't cause the massive destruction of the sinus cavity as does weg's, but wondered your experiences.
She was seen by a laryngologist that was supposed to refer her to an ent if he found any abnormalities, but he didn't.
A few years ago, her sinuses were checked by an ENT and a scan was done.
They found inflammation on the scan but found nothing visually looking in her sinuses.

She always felt like her nose was stuffed, especially in the bridge of her nose area.
I think it is just inflammation of the blood vessels and nerves in her sinuses.

I really feel for all of you that suffer from the damage Weg's causes and hope the new treatments stop the damage.
Thanks for your experiences.

[annekat]

I had lots of weird and changing symptoms before the destruction of my nasal cavity.... so it's hard to say. There may have been some snorting, trying to clear mucus that was building up. It seems like any sort of inflammation in there, whether with MPA or GPA, could cause plenty of problems over time and plenty of different symptoms, since the physiology of that whole area is so complex. Fortunately, not all Weggies with sinus involvement do end up with the extensive destruction; even some I know who have had Wegs for a long time, including some relapses, have avoided that, though they may have plenty of problems in there nevertheless. I'm glad to hear MPA doesn't cause that massive destruction, but that doesn't minimize your mom's kidney involvement and all of her other issues. If they could find a cure for all kinds of vasculitis at once, and stop them all in their tracks, wouldn't that be great! I hope the snorting is temporary and she gets some relief from it soon. Are you planning another meeting with the new rheumatologist? And I don't remember whether she has a good ENT, in addition to the nephrologist.

[mrtmeo]

I had lots of weird and changing symptoms before the destruction of my nasal cavity.... so it's hard to say. There may have been some snorting, trying to clear mucus that was building up. It seems like any sort of inflammation in there, whether with MPA or GPA, could cause plenty of problems over time and plenty of different symptoms, since the physiology of that whole area is so complex. Fortunately, not all Weggies with sinus involvement do end up with the extensive destruction; even some I know who have had Wegs for a long time, including some relapses, have avoided that, though they may have plenty of problems in there nevertheless. I'm glad to hear MPA doesn't cause that massive destruction, but that doesn't minimize your mom's kidney involvement and all of her other issues. If they could find a cure for all kinds of vasculitis at once, and stop them all in their tracks, wouldn't that be great! I hope the snorting is temporary and she gets some relief from it soon. Are you planning another meeting with the new rheumatologist? And I don't remember whether she has a good ENT, in addition to the nephrologist.

Hi Anne,
She has an appointment with the new rheumy in Jan.
She doesn't have an ENT right now.
I know sometimes people can start out with MPA and they switch it to weg's due to granulomas, but so far, there have been no granuloma's found.
I'm sure anytime you stop a blood supply to a part of the body it can necrotize, so MPA could potentially cause some damage, but it is rare.
I have not read anything in the literature about sinus damage, only sinus involvement with MPA.

[annekat]

That makes sense about the possible necrosis with any inflammation or cut-off to blood supply, whether there are granulomas or not. Good thing it is rare in MPA, and that no granulomas have been found in your mom. Perhaps the new rheumy could recommend a good ENT with vasculitis experience, if you feel she could benefit from one at this point.

[mrtmeo]

That makes sense about the possible necrosis with any inflammation or cut-off to blood supply, whether there are granulomas or not. Good thing it is rare in MPA, and that no granulomas have been found in your mom. Perhaps the new rheumy could recommend a good ENT with vasculitis experience, if you feel she could benefit from one at this point.

yes, that would be a good idea to ask her rheumy because he is part of the prohealth system that her other drs are a part of.
I had a recommendation for an ENT that knows about weg's, but he is part of another system that I have had really bad experiences with and they still don't share medical data, yet.

[me2]

Sinonasal computed tomography in patients with Wegener's granulomat... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/16365586)

"bony destruction, mainly of the nasal cavity, maxillary sinuses, and mastoid cells"

I have had sinus involvement for over 30 years. A CT of my sinus shows both the thickening mentioned and the destruction mentioned.
I know at least one person here was accused by their doctor of being a coke addict because of the destruction.

I'm not familiar with snorting as a problem but I could easily imagine it ocurring as a result of both thickening and erosion. My ENT recently did surgery on my sinus. It was out patient and I am extremely happy with the results. My sinus has not been this good in years.They were not able to do surgery on me before this because I still had active sinus disease. After they quieted down I was a prime candidate.
I hope for some improvement for your mom.