Infomation regarding saddle nose formation

[Alysia]

No saddle nose in Lupus, Deb. Only in wg. And not without severe long time bleeding and crusting.
When my sweetie was alive we started a thread here trying to count how many of us have saddle nose. It was about half.
I am happy with my saddle nose because my beautiful soul mate also had one, so its nice to look the same.
Phil told me that when someone asked him what happened to your nose, he said: I had a fight.. you should have seeing the other guy..

[annekat]

According to Wikipedia: Saddle nose is a condition associated with nasal trauma, congenital syphilis, relapsing polychondritis, granulomatosis with polyangiitis, cocaine abuse, and leprosy, among other conditions.

So there are other medical conditions that can cause it, but lupus was not mentioned and I haven't heard of it with lupus.

I just looked, relapsing polychondritis doesn't seem to be a vasculitis, but does seem to be an autoimmune condition that attacks cartilage and is treated with immunosuppressant drugs. It more typically attacks the cartilage in the ears but can attack it anywhere, including the nose.

[debra]

Actually i beleive its lupus pernio, i cant post a link here. Also on medscape theres cases with lupus eryth as well. Also cancers of different sorts, but more in the granuloma family would be Sarcoids, which effects alot of the same areas as wegeners... Sarcoids also presenting in the lungs, almost exact to wegeners. Syphillis can also cause this, as well as leprosy... Surprising to say, there are quite a few that can do this, even aids in some cases... I guess it makes sense though, in tissue death. As i mentioned previousely, my mouth looksas though its painful, or was painful, and surprising enough, i felt absolutely no pain, at all... The nose changing shape, i felt discomfort, and did have some bleeding but nothing severe. Never had a bloody nose in my life, till this... Oddly, my nose now has no feeling... Tissue death, for sure, which is what wegeners goes on to do... Wegeners is in my records as most probable, not a doubt for a second on this. Patient directed to specialists, ect, ect. Only the specialists arent specialists in wegeners. Needle in a hay stack, here, but possible... I do not blame my primary for being frightened, it is what it is... Not easy for her, im sure... If treatment comes in time, i see it as Gods will... Either way, its his will... Maybe like i mentioned a while back, my life/ death can bring some kind of attention up here to wegeners. It us certainly needed! If i can help someone, than this is fine with me, doesnt mean im gonna sit back and do nothing, no not at all... Sorry for typos... Debra...

[annekat]

Whatever. My main point was in saying Wegeners isn't the only medical condition that can cause saddle nose. For our purposes, Wegeners is the most important and likely one. But the collapsed nose is only an unfortunate result of the underlying disease. The saddle nose in itself is not life threatening unless it prevents a person from breathing. None of us wants a saddle nose, those that have one learn to deal with it, and I don't blame anyone with WG who doesn't have one for worrying about it or wondering what their chances are of getting one. Early diagnosis and treatment, along with proper care of the nasal and sinus areas, is the best way to prevent it.

[debra]

Heres one that shocked me, till reading the mechanism of why, crohns diesease! Not sure if i spelled that right, but there are some here with both, if i remember correctly... Real fastinating, as i never would have thought this... And then theres my all time favorite, cocaine addiction! Favorite cause im pretty sure those with nose involvement have been asked this... Alysia, theres even more than this, but needless to say, it happens... Debra...

[annekat]

I think Alysia already knew about the cocaine thing. It has been discussed on here a fair amount and has already been mentioned in this thread. We were talking more about medical conditions such as autoimmune ones. I know someone with Crohn's disease and it is an autoimmune inflammatory bowel condition.... if you are saying saddle nose can result from that you are going to have to post a link..... yes, there are people on here with multiple autoimmune and other conditions. If I had Crohn's and WG and a saddle nose, I'm pretty sure the saddle nose would be from the WG and not from the Crohn's.

[annekat]

www.ejcrim.com/index.php/EJCRIM/article/download/123/72‎


You are right, Deb, saddle nose can happen with Crohn's, though it is very rare. Most explanations were not complete, but the above one was a PDF that went into a lot of detail. I had to capture the link off the Google results and can only hope that it works here. If not, one can Google Saddle Nose and Crohn's. Just checked, the link works, as long as your device can download it.

[Alysia]

I think that the case in this article is not a case of crohn but a case of wg with colon involvment. My gastro dr. Said that crohn disease and WG looks exactly the same in colonscopy. Same granuloma. You cant differentiate. Also in crohn there is positive C anca, although not in this case. They ruled out wg because she didnt have involvment of kidneys, lungs and brain, but we all know that it is not a must in order to have wg. We do have weggies friends like that.
Maybe I am wrong but this what I think. Saddle nose is mostly ours.

[annekat]

That wasn't the only article, just the one that would show all the content... anyway, they all mentioned that in Crohn's there is sometimes, very rarely, "extra-intestinal" involvement, not only in the sino-nasal area, but the joints, which also sounds like Wegs, but we all know we aren't the only ones with joint pain. I didn't read it thoroughly but in at least one place, the granulomas present were referred to as "non-necrotizing", and we know ours are necrotizing, I think... meaning causing tissue death. A perforation in the septum can cause saddle nose without the tissue being eaten away. Mine started as a perforation and the whole septum was eaten away later, but the saddle nose was complete with just the perforation, since it happened at the spot where the septum was attached to the bone. Anyway, I think we are getting a little technical, although I understand, Alysia, why you with colon involvement would be more interested in the details. I don't quite understand why we'd want to lay claim to saddle nose as "ours" and why we'd rule out other possible medical reasons for the breakdown or perforation of the septum. I do think that although Wegs is said to be rare, it is less rare than most of these other conditions in which the nose can collapse, so a saddle nose with other typical Wegs symptoms in the nose and sinus area would definitely point at Wegs first and foremost.

Looking back at the original post, several months ago, Ian said he didn't have crusting or bleeding and that he didn't feel the nose had collapsed, just changed shape. He'd been dealing with the pain for ten years. Some of us thought it still sounded like Wegs, others thought it might not be. He mentioned ear problems, which could be Wegs, but could also be relapsing polychondritis, which I read elsewhere mainly causes ear problems but can also cause saddle nose. He mentioned a butterfly rash, which I had at dx, due to inflamed sinuses. He mentioned strawberry gingivitis, which can be Wegs, but needs to be biopsied. A main issue was that he had had bad experiences with doctors and seemed to avoid going to them. I hope by now he has been to a good one who can get to the bottom of what has been going on with him for 10 years. Ian, if you are still there, has there been any progress in getting a diagnosis and treatment? We'd love to be updated.

[Titus3:2]

The majority of people in the USA with a saddle nose are probably cocaine user's.Saddle nose seems pretty rare in any case.Never meet anyone with syphilis.Just my opinion.