Infomation regarding saddle nose formation

[drz]

I would look for an ENT doctor that is a Weg endorsed specialist too. You may have some autoimmune disorder that is causing your problems and need to get it correctly diagnosed and treated.

[Middlesista]

GPA Nov 2015: I saw an Oto-larynologist at MGH yesterday and asked about saddle nose. She mentioned they see a lot of folks with GPA due to some of the associated involvements including saddle nose. I was asking since this is also a concern of mine since it does seem to be a common complication.

The doc at MGH did a thorough exam and told me all was well and that usually folks that develop saddle nose have disease in their sinuses and/or nose with crusting and bleeding. I thought I had read some posts awhile back where folks mentioned that they did not have bloody noses or crusting prior to developing a saddle nose?

[Alysia]

GPA Nov 2015: I saw an Oto-larynologist at MGH yesterday and asked about saddle nose. She mentioned they see a lot of folks with GPA due to some of the associated involvements including saddle nose. I was asking since this is also a concern of mine since it does seem to be a common complication.

The doc at MGH did a thorough exam and told me all was well and that usually folks that develop saddle nose have disease in their sinuses and/or nose with crusting and bleeding. I thought I had read some posts awhile back where folks mentioned that they did not have bloody noses or crusting prior to developing a saddle nose?

I dont think so. My saddle nose was created after about 4 years of crazy bleeding and crusting. No saddle nose without severe long inflamation that "eat" the bridge of the nose. So, dont worry.

[annekat]

I can't imagine the septum getting eaten away without noticing some symptoms during that process. I had two and half years of recurring "sinus infections" before finally being dx'ed, and I'm sure there was at least some blood and crusting, though I remember that as escalating closer to the time of dx. I don't know when my saddle nose started and it seemed to happen all at once right before my actual dx. I'd been in the hospital to have my lungs looked at and no one mentioned it, so I don't know if it was there; I noticed it soon after returning home, which pretty much told me I had WG, though no biopsy had been performed yet. Do you have sinus symptoms and discharge without any blood or crusting? Just curious.

[debra]

Ian, dont know if you will see this, but some of youre symptoms sound like lupus, and some wegeners... Just because you have one, doesnt mean you cant have another, as im sure you know! Autoimmune issues can go on to attract more, like a collection of friends! Who needs enemys with these right? The butterfly rash, sounds like aclassic lupus symptom... Lupus can also saddle the nose, and alot is similar between wegeners and lupus. Again, could be both, over lapping... Just a thought... Middlesista, i beleive the nose can be effected at any time with wegeners. Doesnt nessicarely have to involve pain and bleeding in my opinion only. I say this because although i had some pain, not many bloody noses, coarse before this, i never even had one. My nose changed shape a little, but hasnt saddled, YET! My mouth on the other hand, happened with absolutely NO pain! Took out the bottom teeth with gum and bone, in about eight months time, o pain! Thank God, my top are all there! For now! Also thankful for a small mouth, though some may argue that! Haha...so its not real noticable, but a huge blow for sure.. Things can change pretty fast, even when treated, please dont hate me for saying this! Just saying so you can stay alert... Some have no eye issues, then later go on to develop them sometimes years later, with treatment, so just stay vigilant... Good luck... Debra... Sorry in advance for any typos!

[Middlesista]

I dont think so. My saddle nose was created after about 4 years of crazy bleeding and crusting. No saddle nose without severe long inflamation that "eat" the bridge of the nose. So, dont worry.

Thanks Alysia although I am sorry to hear about your experiences with your nose so many things can happen with GPA

[Middlesista]

I can't imagine the septum getting eaten away without noticing some symptoms during that process. I had two and half years of recurring "sinus infections" before finally being dx'ed, and I'm sure there was at least some blood and crusting, though I remember that as escalating closer to the time of dx. I don't know when my saddle nose started and it seemed to happen all at once right before my actual dx. I'd been in the hospital to have my lungs looked at and no one mentioned it, so I don't know if it was there; I noticed it soon after returning home, which pretty much told me I had WG, though no biopsy had been performed yet. Do you have sinus symptoms and discharge without any blood or crusting? Just curious.

Hi Anne - I do have occ sinus type discomfort in my forehead and discomfort in my nose at times and occ "runny nose" that is clear drainage. No blood or crusting thus far. I did speak to my RA also so was happy to have a thorough "look see" by the doc at MGH

[Middlesista]

Deb - you are so on target with things changing quickly with GPA and staying vigilant. I have already lost my vision twice and was fortuante that it came back after treatment but I am very in tune with that. Lost my hearing in my left ear and that has not come back except for being able to hear loud noises which is better than hearing nothin at all with that ear

hope you are following up with tour treatment plan Deb and things are heading in the right direction for you. Remember - you are the captain of your "ship". ☺️

[annekat]

Hi Anne - I do have occ sinus type discomfort in my forehead and discomfort in my nose at times and occ "runny nose" that is clear drainage. No blood or crusting thus far. I did speak to my RA also so was happy to have a thorough "look see" by the doc at MGH

Many of us with sinus involvement don't get saddle nose, and it doesn't sound very likely in your case.... I don't remember if you were diagnosed and treated quickly after first presentations of symptoms, but if you were, that is a good sign, and the disease will have slowed down enough to make saddle nose unlikely, I'm guessing. What could happen in the future, of course, is unknown.

[debra]

Thanks, my sista! Working on it, but slow is the way... Patience, oh boy have i learned this! But i needed to, as its a weak area for me. Not anymore! My sista in the middle, dont lose hope on youre hearing, cause this also can change pretty quick. Mine, in the left took a few weeks, were as before it returned much faster. So you just never know... And of coarse this is so far without my needed treatment, so you should do better! Very encouraging for you... Good luck... Debra...