how many of us have saddle nose ?

[Alysia]

Hi,
Phil wondered about it in another thread, so I though we can "collect" that info here.
I do have it :crying: and it started about 2 years of having WG without getting proper treatment. it became more obvious after 4 such years and stopped "moving" after getting the rtx.
I only saw for real one girl with saddle nose, and she happened to be a weggie.
It makes me sad sometimes. it's another loss due to WG. but I am getting used to live with it. not sure about surgery. sounds scary :w00t:

[mishb]

Nope, I don't even though the shape is changing, it hasn't saddled

[pberggren1]

I got it in 2011.

[Alysia]

Being sad about having saddle nose, Phil cheered me up with this one:
he told me that when people ask him what happened to his nose he says: "I was quarrelling. You should have seen the other guy" :lol:
Thanks Phil for that, and for allowing me to share it here :wub::hug1:

[LisaT]

Looking at your photos, I wouldn't notice it on either of you. Just a beautiful (very young looking) woman and a handsome man! :thumbsup: I don't mean to minimize your feelings or any self-consciousness you have about it; just to let you know you still look great. :thumbup:

[pberggren1]

My profile pic was before the saddle nose.

[Alysia]

My profile pic was before the saddle nose.
aww :blushing: you are not less beautiful or stunning now, sweetie, trust me, I would say even more :wub:
Batman would say: when u r hot, u r hot :wink1:

[Miranda]

I have it as well. I got is right when i was diagnosed pretty much. 2008. Its part of who we are :)

[Michael Bell]

saddle nose free but it has been broken a few times and has never looked very pretty.
Mike

[jvilner]

So far so good. One less problem to worry about

[annekat]

I have it. I went 2.5 years without diagnosis or treatment for WG, with what seemed to be just a series of ear and sinus infections. This is very common. For me, it was plenty of time for the damage to be done, and I first noticed the nose right before diagnosis; in fact it was was why my ENT was sure I had WG, and that he had goofed up by not thinking of it as a possibility. He was very apologetic, and went ahead and did a nasal biopsy, which came back positive. That was in April of 2011, and I don't think my nose has changed, even though a lot of bone erosion has gone on in my sinuses and nasal cavity since then.

[Alysia]

thanks for replying. so far: 4 have it. 4 not. we need more info.....

[LisaT]

I don't. Phil I'm sure you're still handsome. Anne, it still shocks me that an ENT could overlook the possibility of this disease! I'm glad you didn't suffer any worse damage while awaiting a diagnosis.

[annekat]

I don't. Phil I'm sure you're still handsome. Anne, it still shocks me that an ENT could overlook the possibility of this disease! I'm glad you didn't suffer any worse damage while awaiting a diagnosis. I understand your shock, but I have heard this story over and over again. They see so many people with these recurring sinus infections, and even worse problems than what I had, simply resulting from allergies and poor structure such as deviated septums. I was found highly allergic to many pollens and molds, so it was pinned on that, and I got shots for a year and a half. My big ear infection at the beginning should have been more of a clue, though, followed by all that other stuff. But Wegs is very rare, so they consider it to be unlikely if they think of it at all. That may be changing, as it seems to me there is more awareness about it, thanks partly to entities like this forum. My ENT said he recently got another WG patient, making it three for him. I don't know if he dx'ed this patient, but I certainly believe he will be quicker to clue in to this now.

[Lilly]

Hi,
Phil wondered about it in another thread, so I though we can "collect" that info here.
I do have it :crying: and it started about 2 years of having WG without getting proper treatment. it became more obvious after 4 such years and stopped "moving" after getting the rtx.
I only saw for real one girl with saddle nose, and she happened to be a weggie.
It makes me sad sometimes. it's another loss due to WG. but I am getting used to live with it. not sure about surgery. sounds scary :w00t:

Hi Alysia, I know any surg sounds scary. I wouldn't have it unless it was totally flat (like mine was) It was hard to breath, and totally scared kids and people stared at me. But if you decide to have the surg. be sure to let your Dr, know that you want him to use something "plastic" or other item they use in surgery. If he tries to fix it with ANY of your flesh (cartlidge) or even someone who has donated cartlidge that does not have wegeners, YOUR wegeners will completely destroy it within months! I have a piece of plastic in my nose that HAD cartlidge from one of my ears on both sides of it. It was fuller after the surg. and started getting smaller as my cartlidge was taken by the wegeners. But the little plastic was enough to just look "normal" enough for me to be happy. Just a little tidbit of my experience. Any questions, just ask! love Ya <3

[Yvonnea]

I have it. Got it in 2011 (7 years after dx). Don't plan on surgery as "luckily" mine was not so bad and did not affect my breathing etc. Have got restylane fillers to correct it cosmetically, and am very happy with results.
I am surprised Lilly that they used plastic in your surgery. I always thought this was not done as it could cause a flare. Anyway, glad that you are happy with the results. It looks great in your pic :-)

[chris.wg]

No saddle nose though the ent says I have a mildly deviated septium and several senecia <spelling> formed in my sinus cavity. That causes its share of issues with breathing especially when I wake up with a full sinus that I have to try to clear out around them.

[annekat]

No saddle nose though the ent says I have a mildly deviated septium and several senecia <spelling> formed in my sinus cavity. That causes its share of issues with breathing especially when I wake up with a full sinus that I have to try to clear out around them. Does the ENT say your deviated septum is caused by Wegs? I have heard a few on here talking about their noses becoming crooked, but not saddled. I already had a mildly deviated septum, as do most in my family and, I have read, quite a few people in the general population. It wasn't causing me much problems with breathing, unless things got totally clogged, and neither does my saddle nose. Just curious if this is another side effect of Wegs; seems like it could easily be.

[annekat]

I have it. Got it in 2011 (7 years after dx). Don't plan on surgery as "luckily" mine was not so bad and did not affect my breathing etc. Have got restylane fillers to correct it cosmetically, and am very happy with results.
I am surprised Lilly that they used plastic in your surgery. I always thought this was not done as it could cause a flare. Anyway, glad that you are happy with the results. It looks great in your pic :-) I have always read on here that any type of artificial fillers or plastic are not good in saddle noses with Wegs for the possible flaring problem. I don't know what restylane is, though, and would like to know more. Probably the only way I could ever afford to get mine fixed would be with a filler type of method that doesn't involve surgery. I have no problem with breathing, it would just be cosmetic. And as for using cartilage, I've heard of several on here who have not had the new cartilage eaten away and have had good results with that. I'm sorry that didn't work for you, Lilly, but glad the plastic does make you feel OK about your nose. It looks good in your pictures.

[annekat]

I don't. Phil I'm sure you're still handsome. Anne, it still shocks me that an ENT could overlook the possibility of this disease! I'm glad you didn't suffer any worse damage while awaiting a diagnosis. One more clarification here, Lisa; I was not awaiting a diagnosis. I thought like the ENT thought that I had severe allergies and chronic sinus issues related to that. When my lungs got bad was when someone mentioned Wegs and the dx by nasal biopsy came soon after that, just after I noticed the nose. I wish I knew for sure when the nose dropped! But I don't, and no one mentioned it; my glasses hide it pretty well. I noticed it by running my finger along the bridge of my nose, and not by seeing it. That doesn't mean it isn't ugly, especially from some angles.

[chris.wg]

Does the ENT say your deviated septum is caused by Wegs? I have heard a few on here talking about their noses becoming crooked, but not saddled. I already had a mildly deviated septum, as do most in my family and, I have read, quite a few people in the general population. It wasn't causing me much problems with breathing, unless things got totally clogged, and neither does my saddle nose. Just curious if this is another side effect of Wegs; seems like it could easily be.

He never said the ent was kind of 2ndary in my treatment locally. I see my first visit to the University ENT in a few weeks I will ask his opinion. I always guessed I did after something at work almost 15 years ago because shortly after that breathing thru my nose felt a bit strained but the more I learn about WG for all I know that could have been when it first started showing and knowing nothing about it I attributed it to the work issue.

[LisaT]

No saddle nose though the ent says I have a mildly deviated septium and several senecia <spelling> formed in my sinus cavity. That causes its share of issues with breathing especially when I wake up with a full sinus that I have to try to clear out around them.

I also have a deviated septum and very narrowed nasal breathing space whatever that's called, with "adhesions".

[LisaT]

One more clarification here, Lisa; I was not awaiting a diagnosis. I thought like the ENT thought that I had severe allergies and chronic sinus issues related to that. When my lungs got bad was when someone mentioned Wegs and the dx by nasal biopsy came soon after that, just after I noticed the nose. I wish I knew for sure when the nose dropped! But I don't, and no one mentioned it; my glasses hide it pretty well. I noticed it by running my finger along the bridge of my nose, and not by seeing it. That doesn't mean it isn't ugly, especially from some angles.

Sorry I misunderstood or misstated. If others didn't notice maybe it doesn't look as bad as you think? I haven't noticed in your pics but I know you said glasses hide it.

[Alysia]

I also have a deviated septum and very narrowed nasal breathing space whatever that's called, with "adhesions".
I also have "adhesions" deep inside.
counting so far: 6 have it. 5 not.

[annekat]

Sorry I misunderstood or misstated. If others didn't notice maybe it doesn't look as bad as you think? I haven't noticed in your pics but I know you said glasses hide it. No problem; in a sense I WAS waiting for a dx, just didn't know it. It's true the glasses hide the nose well.... I notice in Alysia's pics her glasses tend to draw attention away from it. I know a couple friends have noticed it with my glasses on while others have had to have it pointed out, some are just more observant or tuned in to visuals than others. In general, I don't think people notice it much, or if they do, maybe they think I'm a druggie. If you see it from the side without my glasses, it is very obvious and weird looking. But few ever see it that way. I usually don't think about it when dealing with customers. It is in fact a fairly moderate one compared to others I've seen pics of or heard about, and I can usually breathe fine through it, so I guess I'm relatively lucky.

[annekat]

I also have "adhesions" deep inside.
counting so far: 6 have it. 5 not. No one has said I have those, but I wonder. I sometimes think I feel things in there that are sort of stuck and won't move. But they aren't very big.

[windchime]

I also have a deviated septum and very narrowed nasal breathing space whatever that's called, with "adhesions".

I have a deviated septum too and now I have some bony growths, but ENT says I don't have wegs in my sinuses.

[Jaypfei]

My saddle nose started as a small dent in the upper bridge of my nose. It is basically how I knew the disease was back in Oct 2012. I remember snarffing bloody chunks, having the horrible headaches and pain in my ears. Actual pain from the saddle nose??? Nope. This relapse is what destroyed my hearing in left ear and then started to destroy my hearing in right ear.
I had sinus biopsies Dec 2012 and at that time my ENT widened the left nostril so that I could breathe through it. It was so narrow that any inflammation would close it off. He also replaced the tubes in my ears.
I do have a picture in my profile of the saddle nose, as well as a picture on my FB page.
I don't feel self conscious at all. My glasses camouflage the condition and truthfully as long as it doesn't interfere with my breathing, I don't have plans to have corrective surgery. People seem to take more notice of my BAHA (bone anchored hearing aid) than my saddle nose.

[annekat]

Me, too, Jolinda, no pain from the saddle nose. I had read about them and when I felt the bridge of my nose one day, I knew it had to be. This was just a couple days after the doc in the hospital during my overnight stay had mentioned WG as a possibility after seeing the CT scan of my lungs. If it was there then, he either didn't notice it (glasses) or didn't mention it. Not likely I'll ever get the surgery, either.

[Alysia]

I used to have lots of pains in my nose for years (prob when the "saddling" was created) which stopped only after the rtx. still my nose "feels" "fragile" :w00t:
counting so far: 7 have it. 5 not. Cindy, I didn't understand, do you have a saddle nose ? from your pic it seems that not... ?

[Alysia]

Hi Alysia, I know any surg sounds scary. I wouldn't have it unless it was totally flat (like mine was) It was hard to breath, and totally scared kids and people stared at me. But if you decide to have the surg. be sure to let your Dr, know that you want him to use something "plastic" or other item they use in surgery. If he tries to fix it with ANY of your flesh (cartlidge) or even someone who has donated cartlidge that does not have wegeners, YOUR wegeners will completely destroy it within months! I have a piece of plastic in my nose that HAD cartlidge from one of my ears on both sides of it. It was fuller after the surg. and started getting smaller as my cartlidge was taken by the wegeners. But the little plastic was enough to just look "normal" enough for me to be happy. Just a little tidbit of my experience. Any questions, just ask! love Ya <3

thanks for sharing, Lilly :thumbup: that is intresting that you have a "plastic" inside and feel well. from the outside you just look great :love:
if I will go for a surgery one day, I will check with you about more details.

[Alysia]

. Have got restylane fillers to correct it cosmetically, and am very happy with results
thanks for sharing :thumbup: what are those ?

[annekat]

Jolinda, just looked at your saddle nose pics on your profile. The only one of the two that I was able to enlarge was the one with your glasses on. The nose looks cute with the bridge part covered up. I think it's pretty similar to mine, which is just a little more turned up than I'd like it to be, but not too bad.

[LisaT]

thanks for sharing :thumbup: what are those ?

restylane is a filler like botox that is injected, at least when it's used as a wrinkle filler. I'm not sure what the procedure is to fix saddle nose. I tried it once for the deep line from nose to outside of lips. (has a weird name like nasolabial fold or something like that; I call them jowls…) It worked well at first, then seemed to lose the effect way sooner than it was supposed to. I normally don't do and won't do any sort of cosmetic surgery or injections; decided to try that one because a friend of a friend was bringing her supplies and doing it at a friend's house for a group discount. Couldn't resist as the 'jowls' bug me. I've since decided to live with them like everything else that seems to be changing. I feel like my immune system has enough to manage without injecting unnecessary foreign substances. (Totally different considerations when it's for reconstructive purposes; I can understand wanting to fix saddle nose. For me, the wrinkle stuff seems like too much toxicity for vanity's sake.)

[Lilly]

Hi Miranda. I am extremely proud that you all can deal with the saddle nose so well. I wish I had been. I think I had it for awhile, my nose was changing. It was very long and so it wasn't that noticeable. But it was to me. But the day I literally woke up, and it was totally flat! I think I slept on it funny on my pillow, or something, but it just kind of completely "fell" into my face. I don't think I was really caring how I looked as much as it cut off my breathing so much. But I am not sure what the Dr. used in the second surgery to hold my nose up. Someone had mentioned that "plastic" would cause a flare. So I am sure he used something that plastic surgeons use that our bodies will not reject. So far so good! Everyone on here that has saddle nose looks great! I wouldn't do it unless it was interfering with your breathing. Oh, Mom and I got our Wegerners Shirts yesterday! It has the red ribbon on the front, and all the symptom on the back. It is so nice! The shirt itself is of great quality! Its thick T-shirt material, not thin. For only $10. its a great way to spread the word about our dz! Love yall, :-)
I have it as well. I got is right when i was diagnosed pretty much. 2008. Its part of who we are :)

[Gragnoc]

With all of the sinus involvement I have experienced that past 15 years. I am very surprised that I do not have a saddle nose, but my sinuses do not drain properly and have to do saline irrigation constantly to clean out all of the junk.

Alysia, I saw your profile pic and I think you look beautiful! :thumbup:

[annekat]

Lilly, I think it is obvious that your nose had to be fixed and I'm glad they went ahead and used the plastic after the cartilage didn't work. i don't think everyone's cartilage will get eaten up in this scenario, but yours did because everyone is different. I know they warn against the plastics and artificial materials for Weggies especially because of it possibly triggering a flare, but you are a case in point that it will not always happen and some of these warnings we hear may be a little overly stated. I'm glad it worked out so well for you. I do also hear that we should be in remission before any such surgery, and guess I'd go along with that.

Alysia and Lisa, I was PMed by Yvonnea who uses the restylane in her nose, and she says it is made from a substance that our bodies naturally produce. I'm not sure what that means, and more research would be needed. She says she must have it redone every few months but is otherwise very happy with it. Perhaps she will respond here, too, with better info than what I can give.

[annekat]

With all of the sinus involvement I have experienced that past 15 years. I am very surprised that I do not have a saddle nose, but my sinuses do not drain properly and have to do saline irrigation constantly to clean out all of the junk.

Alysia, I saw your profile pic and I think you look beautiful! :thumbup: I'm not sure how it all works, but maybe the problems are staying in your sinuses because they are so blocked up, and not occurring as much around your septum. And maybe you have extra strong cartilage there, compared to some of us. People on here can testify to the fact that lots and lots of saline irrigation can prevent a lot of damage, so keep that up, and I hope you see some improvement soon!

[Yvonnea]

Some folks here asked for a little bit more info. on restylane to correct the appearance of a saddle nose.

"Restylane is a crystal clear gel that is injected into the skin (or for some treatments just under) in small amounts to restore volume and structure. It is based on hyaluronic acid, similar to the body’s own hyaluronic acid that diminishes as we age. The hyaluronic acid in Restylane is non-animal which means that no skin tests are needed and that there is a minimal risk of allergic or hypersensitive reactions".

I get a product called Restylane Perlane as it is more suitable for the nose area.
It takes less than 10 mins and the results are immediate.
It is expensive, One injection costs about 350 euro and lasts at least three months but that depends on the individuals metabolism.

I have had no problems in the three years I have been getting these fillers. I discussed and researched it thoroughly with my ENT, and now go to one of the top plastic surgeons in Sweden to administer it.
Happy to answer any questions.

Yvonne.

[Gragnoc]

I'm not sure how it all works, but maybe the problems are staying in your sinuses because they are so blocked up, and not occurring as much around your septum. And maybe you have extra strong cartilage there, compared to some of us. People on here can testify to the fact that lots and lots of saline irrigation can prevent a lot of damage, so keep that up, and I hope you see some improvement soon!

Thank you Anne. :smile1: I appreciate the encouragement. :smile1:

[Alysia]

thanks Yvonne for sharing here. (I also got PM). its important info. although I am too afraid to use it.
thanks Greg for your kind words :blushing:

[LisaT]

Hi Miranda. I am extremely proud that you all can deal with the saddle nose so well. I wish I had been. I think I had it for awhile, my nose was changing. It was very long and so it wasn't that noticeable. But it was to me. But the day I literally woke up, and it was totally flat! I think I slept on it funny on my pillow, or something, but it just kind of completely "fell" into my face. I don't think I was really caring how I looked as much as it cut off my breathing so much. But I am not sure what the Dr. used in the second surgery to hold my nose up. Someone had mentioned that "plastic" would cause a flare. So I am sure he used something that plastic surgeons use that our bodies will not reject. So far so good! Everyone on here that has saddle nose looks great! I wouldn't do it unless it was interfering with your breathing. Oh, Mom and I got our Wegerners Shirts yesterday! It has the red ribbon on the front, and all the symptom on the back. It is so nice! The shirt itself is of great quality! Its thick T-shirt material, not thin. For only $10. its a great way to spread the word about our dz! Love yall, :-)


Lilly, you look beautiful, and breathing is definitely high up on the list of priorities, so I'm glad you had the procedure. Do you have a link to where you ordered the short from? Or a photo?

[LisaT]

Thanks, Yvonne. Now I might not hesitate to get it again, except for the price. Also I was told when used to fill wrinkles it should last six months to a year and it didn't... I'm glad it's working for you although it would be nice if it lasted longer. Shouldn't the cost be covered by health care or health insurance if it restores breathing and is not for cosmetic reasons alone?

[Dirty Don]

Lisa, I had to 'fight' for coverage of the synthetic filler the ENT put in my Eustachian tube to rebuild it. Insurance company claimed at first that it was cosmetic...really? It was IN my E tube...sheesh. Anyway, doc did insist it was necessary as nothing else may work...well, it didn't work, but the insurance company paid anyway at the doc's insistence...YEA...got one on the insurance company!

[annekat]

Lilly, your nose sounds like it was a lot worse than many of ours. So of course you needed to do something about it. And I agree you look beautiful in your pics.

[Alysia]

Lilly, your nose sounds like it was a lot worse than many of ours. So of course you needed to do something about it. And I agree you look beautiful in your pics.

I echo the others: Lilly, you look beautiful :love: I wouldnt have guess that you did any surgery to your nose :ohmy:

[vdub]

Put me down as a "no saddle nose".

[Alysia]

counting so far: 7 have it. 6 not.

[Jayne 14]

I have saddle nose - and hate it
When I can & the docs say they can I really want it doing .
I try to avoid pictures or lean to 1 side to minimise it



Sent from my iPad using Tapatalk

[annekat]

I have saddle nose - and hate it
When I can & the docs say they can I really want it doing .
I try to avoid pictures or lean to 1 side to minimise it



Sent from my iPad using Tapatalk Some saddle noses are worse than others, though none of them are pretty.... I'm very sorry that yours is as bad as it sounds, Jayne, and wish you great success at getting it approved and done as soon as possible.

[Alysia]

I have saddle nose - and hate it
When I can & the docs say they can I really want it doing .
I try to avoid pictures or lean to 1 side to minimise it

counting so far: 8 have it. 6 not. Jayne, don't be sad. you have us with you and it is our "stamp" of being proud weggies, that are fighting and will also win. :hug2:

[chrisTIn@]

I don't have a saddle nose.

I guess I was lucky being diagnosed relatively early. If my nose- and sinusproblems would have been left untreated any longer, I might have developed a saddle nose or a deviated septum.
When I look closely at my nose, the skin shows a somewhat darker spot. About two centimeters along the bridge and the sides of my nose.
I cover it up with concealer (make-up) so noone notices it.

[Gail Lee]

I have a saddle nose too.

[annekat]

Speaking of deviated septums, a certain, not small percentage of the population has them. My dad had one, my brother does, and possibly most of my family. Not extreme cases, maybe, but deviated all the same. My ENT mentioned mine when I was having all kinds of sinus issues pre-Wegs dx, but didn't act like it was a big deal or needed to be corrected or anything; he sees them all the time, I'm sure. It is, however, another big reason for delayed dx; we just look like half of their patients do anyway. There were no noticeable changes in my nose before the saddle occurred.

[Alysia]

counting: 9 have it. 7 not.

[rebekah]

Make that 8 without... saddle nose is one of the few things I don't have

[Jayne 14]

I have to admit since I've been diagnosed it doesn't bother me as much , still hate it but understand it . And in a way grateful for it : if my dog hadn't knocked it maybe I'd have gone longer before diagnosis ?!


Sent from my iPad using Tapatalk

[drz]

I have a deviated septum from a broken nose in my teens but no evidence yet of saddle nose despite several sinus and ear infections. I did have all the other common symptoms of GPA.

[Alysia]

9 have it. 9 not.
I am counting each time because I am not so good with numbers :rolleyes1:

[jvilner]

I do not have saddle nose.

[Psyborg]

No Saddle nose here either. But I have basically minimal sinus involvement.

[Fran]

In the first 12 months of being diagnosed, my nose became so swollen and painful I could hardly bear to wash my face, but it eventually it calmed down and, surprisingly - no saddle nose.

Fran

[lag713]

I have sinus involvement including nasal and facial pain but I do not have any signs of a saddle nose. My fingers are crossed that it won't become an issue. I'm making note of all the advice from those who have done it just in case!

[Alysia]

wow, we are "beating"the saddle nose: counting so far : 13 don't have it. 9 do :thumbup:

[Gragnoc]

I have sinus involvement including nasal and facial pain but I do not have any signs of a saddle nose. My fingers are crossed that it won't become an issue. I'm making note of all the advice from those who have done it just in case!

lag713,
Have you ever experienced any sneezing fits followed by bleeding?
Greg

[lag713]

I used to occasionally have some blood in my tissues a couple of months ago but no nose bleeds or nasal crusting. When I sneeze, I sneeze 2-3 times in a row but nothing like a fit of sneezing. My allergies are typically red, watery eyes and a runny/stuffy nose with the classic allergy haze.

My ENT did an endoscopy a few months ago and said everything looked good. The nasal/facial pain may be related to inflammation caused by wegs and allergies. He offered to put me on prednisone (I'm only taking mtx right now) but when we discussed the pros/cons it seemed like I would prefer staying away from pred for now. My nose has been a bit sensitive of late so I plan to ask about getting a sinus CT to see if there is anything visibly going on.

[Sukriti]

Hi, I've been diagnosed with Weigners four surgeries down after being sick for nearly a year. And got a saddle nose. How long does the disease take to go into remission? I live in New Delhi, India.

[mishb]

Hi Sukriti and welcome to the forum.
I'm sorry that you have been diagnosed with WG but I'm glad that you are here.

It's hard to now how to answer your question without knowing the history and the medications that you are on.
Remission is a tricking thing. Some find themselves med free within 12 months and others are still going after many many years.

Take some time and read some stories in Member Introductions etc. and maybe (when you feel able), you can add your own story.

We look forward to hearing more from you and learning of your journey so far

[Sukriti]

Hi, thanks for welcoming me, means a lot 😃. I've been on steroids for the last 10 months n chemo for 6.5 months. Now I'm currently on 5mg a day n on Azoran 100mg a day which doc said will continue for a year +.. This forum is so enlightening, thank you whoever started it 👍

[mishb]

Already on 5mg of steroids is a great sign. I hope they have made you feel more human and less .....blah

Yes I agree, it is a great forum and you will find someone on here any time of the day - which is awesome

[Marius]

Also no saddle nose here yet. I have basically only sinus involvement, diagnosed Oct '13 and still on Mtx and 10mg preds at the moment. Still have sinus issues like crustiness and bleeding sometimes, so i'm keeping my fingers crossed...

[LisaT]

I'm trying to figure out what's going on with my nose and thought maybe those of you here with more nose and sinus history could help... I am having more pain in my nose and it feels very dry, not a lot of secretions or gunk coming out when I rinse. (Just some crustiness which is normal for me. No bleeding.) I've had nose troubles for many years before diagnosis and treatment, and the ENT recently said my nose was looking better. So the pain is puzzling. Labs are decent. Any insights welcome. Thanks!

a less pressing but equally intriguing question, why does autocorrect keep trying to change nose to Jose? Is Siri suggesting a name for my schnozz? :flapper:

[Sukriti]

Hi Lisa, it could be because of vasculites

[vdub]

I was going to say "check your humidity", but then I saw that you lived in Delta, so I have no clue. As an aside.... Beautiful part of the world you live in. Vancouver is one of the nicest cities in the world. Unless the winds changed or it got real hot and dropped the humidity to less than 25% like we routinely have, then hard to say.

[LisaT]

I was going to say "check your humidity", but then I saw that you lived in Delta, so I have no clue. As an aside.... Beautiful part of the world you live in. Vancouver is one of the nicest cities in the world. Unless the winds changed or it got real hot and dropped the humidity to less than 25% like we routinely have, then hard to say.

It has been really hot, I don't know what the humidity is but it's usually not too dry here. Yes, I live where I live. Aside from the astronomical cost of housing, which is because it's such a beautiful place to live! And has milder weather than the rest of Canada.

[RussW]

I have saddle nose also... just makes me look like an old cowboy. I'm getting use to it, - kinda!

[Marius]

My ENT told me because of all the damage caused in my sinuses before diagnoses, it will never be normal again. So he reasons that I will always have a little (?) pain and "issues going on" up in my nose. Rinsing does help a lot though...

[Alysia]

counting so far: 14 don't have it. 11 have it.

[Alysia]

Hi, I've been diagnosed with Weigners four surgeries down after being sick for nearly a year. And got a saddle nose. How long does the disease take to go into remission? I live in New Delhi, India.
Hi and welcome to our weggie family :hug1:
there are at least 2 others here from india. I hope you can get in touch with them.
considering your question about getting into remission it depends on many factors, so I can't tell exactly. buy I hope that you will be there soon.

[PJ2010]

Hi. Probably a little late.
I also have saddle nose. When it happened it was so sudden I was shocked.
My normal dr asked me if I had broken my nose. It happened in the week I was hospitalised nearly blind and the specialists were carrying out all types of tests and biopsies. An ent dr drove a rod with a camera up both nostrils into the sinus area (without any anesthetics). I seriously though he broke my nose.
Much later I was told it was damage caused by wegeners.

[Jayne 14]

Hi PJ2010
Welcome to the gang , my odd nose helped me get diagnosed ( ha nose in that word !!! )
So although it's not so pretty it helped me not get any worse
Good luck x


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[Alysia]

counting so far: 14 don't have it.... 13 do.
never too late to write on this thread.....

I am now with Phil at Foothills hospital, so one of the docs asked him to tell the residents about vasculitis. They had the opportunity to see for real, first time, not only one saddle nose, but 2 :wink1:

[annekat]

Hi. Probably a little late.
I also have saddle nose. When it happened it was so sudden I was shocked.
My normal dr asked me if I had broken my nose. It happened in the week I was hospitalised nearly blind and the specialists were carrying out all types of tests and biopsies. An ent dr drove a rod with a camera up both nostrils into the sinus area (without any anesthetics). I seriously though he broke my nose.
Much later I was told it was damage caused by wegeners. Same here; I had just been in the hospital overnight for tests, the doc had mentioned the possibility of Wegs after seeing my lung CT scan. But no one said a thing about my nose, so I don't know if it had happened yet. I do wear glasses, which sort of hide it, but I'd think they could have been more observant not only about that but about all kinds of weird feelings and tightness around my whole eye area. I noticed the saddle nose very soon after arriving home, maybe not the same day but possibly the next one! I do not look at myself in the mirror much, and when I do it's with glasses on, usually. I found the saddle nose by running my finger along the bridge of my nose.... something did not feel right! You can bet that then I got out the set of two mirrors so I could look from the side. Very weird looking. I went to my ENT for a nasal biopsy, which was positive, but he pretty much knew when he saw my nose that I had Wegs.

[PJ2010]

That's unreal. Maybe when we were in the hospital the WG was at its worst.
I still remember I was on the eight floor and I smoked. I was blind in one eye and had 30 percent vision in the other. I realised that if I worked my way out of bed around the wall into the hallway that there were lines on floor. If I held the handrail and followed one of them I could find myself at the ambulance entrance where I could have a smoke.
In the lift there was stainless steel panel. I saw a reflection of myself in it. OMG!!
I looked like something from a horror movie. My left eye, the eyeball was being pushed out of the socket, was bulging and the pupil was looking up to the left. My whole facial appearance was frightening.
By the third day in hospital, because I'd mastered this practice, the nurses started quizzing my room mate. They didn't believe I was virtually blind. Lol

[annekat]

Wow. You were a lot worse off than I was with the bulging eyes, blindness and such. Did the blindness and bulging eye clear up, or are you still at least partially blind? I can't pin the saddle nose on anything they did at the hospital, as far as helping it along, because they really didn't do anything to my nose or facial area; they were concentrating on my lungs, and I did get some nebulizer treatments, but that was about it. True, though, the Wegs was reaching its peak if it hadn't already; I'd been struggling for weeks with lung issues and finally went in when it got bad enough. The nasal and sinus stuff had been going on for a couple of years, and did get worse around that time.... I really have no idea when the saddle nose developed but I'd think someone would have noticed it, but maybe not if they weren't thinking of WG and my glasses were hiding it. I think I would have noticed it, though, so it couldn't have been there for too long.

[PJ2010]

Yes Anne. Thanks to the Eye and Ear Hospital in Melbourne. They were incredible and so professional.
After 5 days of tests they sent me home. A week later I had to go back for the results. As soon as I walked in they admitted me back in and for the next 3 days I was given 1000mg of predisolone a day.
They kept monitoring my vision all the time. By the time I had received the third dose 70 percent of my vision had returned.
Unfortunately I still had crossed vision.
I was so afraid of blindness. They said if I was to totally loose my vision they would not be able to do anything about it.
The damage would have been permanent.
The following day was the day I suffered a burst stomach ulcer. The treatment they gave me causes a massive increase in blood pressure and normally they check to ensure you have no ulcers before treating but I think the pressure was on to save my vision.
Today, my eyes are constantly sore with WG but I have 20/20 vision.
Thank god for the Eye and Ear hospital and staff.

[annekat]

I'm happy to hear that you got all your vision back! Also happy that Michelle has discovered your proximity to people and doctors she knows of, and that you appear to be in very good hands!

[Bing505z]

No saddle nose here

[Victoriaitsnosecret]

I noticed my nose before I noticed anything else. Started as what appeared to be a bump but what was really the cartilage wearing away. It's not too bad. Only I could tell at first now other people notice it if I don't have my glasses on. Look at me head on and you might notice it. It's very noticeable from the side view. PS I had a very cute nose! 😞


😃 victoria

[annekat]

I noticed my nose before I noticed anything else. Started as what appeared to be a bump but what was really the cartilage wearing away. It's not too bad. Only I could tell at first now other people notice it if I don't have my glasses on. Look at me head on and you might notice it. It's very noticeable from the side view. PS I had a very cute nose! 


 victoria Your nose sounds just like mine, hidden pretty well by glasses, worst view is definitely from the side without the glasses! I noticed mine suddenly and that was what told me I had Wegs, which had already been discussed as a possibility, and I'd already done research and was reading the forum, so you bet, I knew what that was when I felt it with my finger and then looked in the mirror.

[cjhnsn29]

I also join the saddle nose group. I wear glasses helps. It's noticeable. Mine also started 2 yrs ago. ENT has me irrigate 4 times a day so it doesn't keep getting infected.

[gilders]

No saddle nose for me. Nose bleeds, crusty scabs, huge bogeys, frequent sinus infectious, but luckily no saddle nose.
Pretty impossible to see how ill I am from the outside, I just appear unfit and overweight.....if only they knew!

[cjhnsn29]

Putting my two cents in ha! My ENT was the first to diagnosis he didn't have a lot of proof till now. Every Drs on the same page now.

[Mas78]

Gilders it sounds like we have even more in common, I don't have a saddle nose either. I don't get many sinus infections but the rest sounds familier.

[Jules]

After my first six weeks in hospital (during which time I chose not to study too closely the person in the mirror that was a shadow of my former self!) I had no idea my nose looked any different. It was only my rheumatologist saying "your nose has confirmed my hunch that this is Wegeners" and my husband nodding in agreement (he was being his usual lovely self and trying not to bother me with any more than I needed at the time!) that I ran my finger over the bridge of my nose. I was told I could have it corrected if I wanted to but, to be honest, it's not too bad and I've got used to it now . . . no-one that's near or dear to me is bothered, so I figure "why should I be?".

[aewaustin]

I have saddle nose, not to bad yet, but I do have two holes in my septum. Going in Wednesday to get a stint put in to help me breathe as my nose is starting to fall apart. Nose surgery is in my future to rebuild it :(

[Velma]

I do.. it began about 2 years after first diagnosed and was on cytoxan and then switched to methotrexate. I had it repaired by using my rib bone for the bridge. It has fallen some but looks better than it did before the surgery. I have the wonderful preddy face in my profile pic here. I get asked all the time if it is broken and I say yes and then change the subject. Yet another reason why we are destined to be different.

[kaysee]

So far I'm good too, despite the many sinus issues I've had. I've always had allergy related sinus problems, so in the past two years with WG (but yet to be diagnosed) I just thought I was having allergies. When I started having bloody nose frequently I realized it was not allergies. Yet another of my many weird symptoms that I could not connect.

Karen, dx'ed April 2014

[Alias]

I've escaped so far. The scarring has pulled my septum area slightly to one side, which is barely noticeable, and there are no perforations. I know I am lucky. In a recent appointment, the rhinologist said surgery to correct the scarring could make things worse rather than better, so I am fine with that, even though my breathing is sometimes quite compromised.

[MikeG-2012]

I have the start of a saddle nose. My septum looks like Swiss cheese. Doctor said it can be repaired if it gets too noticeable or starts to affect the airway.

[annekat]

It is interesting that people still get saddle nose after successful treatment early on for WG. Mine happened right around time of dx, but I hadn't been treated yet and had symptoms in that area for 2.5 years previous. I know that I still had a septum when it happened, but it had a hole in just the right place for the cartilage to lose its support. Now, I have no septum or turbinates and all the thin sinus bones have eroded so there are no distinct sinus cavities anymore. All that happened during my treatment for WG over the last 3.5 years, although things have gone well overall, looking at my bloodwork, energy levels, etc. I did have a couple of mild to moderate flares, so I suppose the further damage could have happened then. Despite all that erosion, my saddle nose hasn't gotten any worse, I don't think, from when I first noticed it.

[miracleshappen08]

I have it!! And it is horrible!! I have breathing problems cuz of it. I hope to have surgery to fix it.


Miracles do happen!!

[Jayne 14]

Miracles do happen
I dream too
Hate my nose



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[miracleshappen08]

I hate mine too!! I with you on that one. This disease is so horrible!!


Miracles do happen!!

[Jayne 14]

But in another way my nose helped me - that's what got me diagnosed so properly saved my life !!
The pred weight gain is hard to accept
But since starting treatment my nose has got a little better - slightly smaller & sometimes I can smell a little
The disease can be horrible but I refuse to let it define or change me . I'm still me Glass Half Full . And will get through this .
Miracles will happen for us . I know they will .
🎉🎉🎉


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[miracleshappen08]

Yes the weight is hard. After they took out my lung last year I was in the hospital for a month. I went from 92 pounds to 175 when I left. I had to do 4 months of therapy at home.

You are right we cannot let it define us! We are stronger then this. It's just hard when you are in so much pain sometimes.

I'm sitting in the ER right now trying to get pain under control.

[Jayne 14]

Oh that's awful
I've never had pain that bad
From your face / nose ?????
Massive massive hugs xxx


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[miracleshappen08]

It is in my sinus cavity on the right side. It feels like my face is being crushed. Well that is the best way to describe it.
Thanks. It will get better. I have to have them scraped out every once in awhile.

[Jayne 14]

Jesus : scraped out
We have a **** disease
Can't think how to spin that into a positive right now , in the UK we have loads of fireworks celebrating 5th November how about we fire all that **** into the sky ????
God bless xx


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[miracleshappen08]

I have been as to write my story and get it published. So I'm going to get started with that. There is so much I have gone through in the last six years!

But I know that God has blessed my so much! It is hard to see the blessing sometimes.

[vdub]

I guess I should add that the nose surgeries I had were the most painful. I have had a liver exploratory, knee surgery, lymph nodes removed, thyroid removed, brain surgery (through the nose), and then the 2 sinuses surgeries. The nose surgeries even topped the knee surgery with regard to pain. It was really a great feeling when they finally removed the wedges from my nose two weeks after the surgery.

[miracleshappen08]

Oh gosh maybe I don't want it now... But I have a hard time breathing.

[Jayne 14]

Oh hon hang in there
You'll breathe better soon And pain gone too


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[vdub]

Yeah, its just one of those things you have to do. Just be prepared for it. They'll give you plenty of pain meds and you'll be fine. The pain only lasts a week or so and its not unbearable -- its just very annoying. My daughter broke her nose and jaw in the military and she has gone through 4 or 5 surgeries. Lots of people do it.

[annekat]

vdub, I know you've had lots of surgeries in your face and head. But was one of them specifically for saddle nose? Just curious.

Miracles, I don't know if paying for the surgery is an issue for you, but I suspect if it is really affecting your breathing that much, insurance would be more likely to cover it. If I got it, at this point, it would be for cosmetic reasons, because it doesn't affect my breathing, and I'm on Medicare, and am not expecting they would cover it, though I hope I'm wrong. I can see yours in your avatar, I think, and it looks a lot like mine. Yours almost looks cute, although it's not that easy to see, and I'm sure you wouldn't agree. If someone told me mine was cute, I think I'd feel like clobbering them. Ha, ha.

[vdub]

No, saddle nose wasn't even mentioned. The two "repair surgeries" were pre-dx, so they were just thinking about opening up channels and stuff to make air flow easier and at the same time vent the sinuses so they could breathe and heal thinking that might help my constant sinusitis infection. That was the second surgery.

The first surgery was partially reconstructive, but I wouldn't say specifically for saddle nose as it was never mentioned. They broke some bones and reset them to straighten the air passages. Wegs wasn't even on the radar, so the question for saddle nose wasn't even asked. I hadn't noticed a saddle nose, but I don't look at myself in the mirror very much either. He called the first surgery as one to correct a deviated septum, which I think is a fairly simple and common issue.

[annekat]

Interesting explanation, vdub. I had a lot of stuff going on for a couple years before dx, too, repeated sinus infections, and a somewhat deviated septum, but never any talk of surgery. The saddle nose didn't appear until right before my dx, and since I don't look in the mirror that much, either, and am wearing glasses when I do, I never noticed it if it started to appear earlier, nor did any docs. But as someone said above, it sure did make my dx more of a foregone conclusion, although I did get a positive nasal biopsy on the same occasion as I showed my ENT the saddle nose.

[miracleshappen08]

This so interesting to read from both of you. I have the devated septum too. And my airway are very narrow and just kinda of weird. But I was diagnosed in 2008, but wasn't until this pass year that it gave my the saddle back nose. And yes @annekat you can see it in my picture. It doesn't really bother me a lot looks wise, it bothers me for other reasons. And yes my insurance would pay for it. I actually will be see my doctor this coming friday to talk options.

[vdub]

The surgery where they opened up my sinus channels was absolutely wonderful. The impact wasn't noticeable until the swelling went down, but then it was obvious how much better I could breath. Previously, I had been pretty much a mouth-breather, but now I almost always breathe through my nose. You just can't imagine the positive difference it made. The cpap at night just made things that much better.

[Geoff]

Not sure if I have missed something, but I have always been under the impression that a deviated septum is a syptom of Wegs?

Before I was DX I complained about sinus issues (Oh how niave we were!) and the consultant looked at the MRI and asked if I had, given the image, been in an accident. I said yes; when I was 5 years old I was hit by a 5 ton Army Lorry as I ran across the road.
The Consultant said, ah that was the result then and proceeded to reem out my nose.
It was as if he had opened up Pandora's Box as I had major issues 2 months later with the onsett of full blown WG and was extremly fortunate to get a correct DX before I croaked it.

The plus side is that I can breath so much easier and am undergoing training to be a sniffer dog at the local airport, such is the increase in my sense of smell!!!!!! :w00t:

[vdub]

I'd bail out of that sniffer dog training, Geoff! I've heard those guys work for food and treats. :-)

I havn't heard of a deviated septum as a symptom of wegs, but I had one. It was part of the rationale for the first operation. Interesting that you have a good sniffer now. Mine has gone the opposite direction. About half my sense of smell is gone, but I've had 3 nose operations, so that might have impacted things. Without the sense of smell, my sense of taste is gone, but the doc almost force-feeds me salt, so it all works out.

[annekat]

Not sure if I have missed something, but I have always been under the impression that a deviated septum is a syptom of Wegs?

I'm not sure about this, but I have heard that many people in the general population have deviated septums without having Wegs. My dad had one, my brother has one, and I have one, which my ENT pointed out to me way before the dx of Wegs was ever considered. I don't think that mine was terribly severe, to the point of needing surgery, but I do think that this condition will increase the incidence of sinus and nasal problems to anyone who has it, since it obstructs proper drainage and can affect breathing and proper function of the nasal passage. At this point, I have no septum, so it is no longer an issue. A disappearing septum is definitely a symptom of Wegs.

[kmac14]

Don't have a saddle nose but very big hole in septum. Docs often use the term 'ooh it's definitely abnormal' when they have a look in ears or nose. I always think to myself 'aims to please!' They love a good look around a wegeners! I always suspected that the ENT who literally straddled me and stuck a pair of pliers up my shnoz to get a chunk of it did create that big hole in my septum. Maybe not I dunno. Don't ever remember sinus issues. I am deaf so there was a lot of the ear problems and the ear pain was bad.

[Motherof2]

I had saddle nose but had it repaired two years ago. The doctor who fixed mine said mine was the worst he had seen and he said he pushed fixing it but defiantly was amazing having my nose back

[gwenllian111]

I don't have it, although my septum is deviated. x

[Bek Stone]

I have it its very pronounced its kinda upsetting and annoying

[Bek Stone]

I think you should b able to see mine in my pic just joined so still trying to work it all out

[Alysia]

if I didnt do mistakes with counting (my mind is too distracted) then 23 have it. 22 dont.
I dont care anymore about having saddle nose, because my sweet Phil, my beautiful soul mate had it, and it was heart warming to see that we shared a same "feature" outside, not only inside... pics in my profile.

[annekat]

I think you should b able to see mine in my pic just joined so still trying to work it all out Yep, checked it out, the pic shows bigger on your profile. I see what you mean, it is a little more pronounced than many. I'm so sorry.... this disease sucks, no doubt about it. I hope you can get it fixed some day. If you can find a way to wear glasses, those cover it up quite well sometimes. But that could be tricky if you don't need glasses to see.

[Bek Stone]

Yea my specialist said theres this new thing that u can get put in thats some kind of gel thingy but ur viens grow thro it coz taking cartilage from somewhere is kinda pointless coz itd get eaten away again. But I believe the only ones of us with WG in the sinuses get the saddle nose if it's localised to lungs etc. You shouldn't get it but mines only in the sinuses atm.

[annekat]

Yea my specialist said theres this new thing that u can get put in thats some kind of gel thingy but ur viens grow thro it coz taking cartilage from somewhere is kinda pointless coz itd get eaten away again. But I believe the only ones of us with WG in the sinuses get the saddle nose if it's localised to lungs etc. You shouldn't get it but mines only in the sinuses atm. I've heard of something called restylane, a gel like substance made from a substance that's produced in our bodies, and you have to repeat it from 1 to 4 times a year. A member named Yvonne told me about it via private message and said she could email me an article about it if I was ever interested. You could look her up on the member list, user name yvonnea, and send her a PM, or also search the term. I know others have been happy with using cartilage from the body and not had it eaten up by WG. You would have to be in remission to do it. I can also forward you the text of Yvonne's private message to me if you'd like and I might also send her a note telling her I was doing so. I don't know if that gel stuff is the same as what you are talking about, because of the part you mention about your veins growing through it.... that makes it sound more permanent, and sorta weird. Anyway, good luck if you decide to pursue this.

BTW, I do have saddle nose, and I have had both lung and sinus involvement. I don't like mine, but it is somewhat hidden by my glasses. They made me take my glasses off for my new drivers license picture, which I am not happy about at all.

[mrtmeo]

I was curious as to what diseases cause saddle nose deformity and found that Syphillis and Leprosy cause it too.
Differential Diagnosis For Saddle Nose Deformity (http://en.diagnosispro.com/differential_diagnosis-for/saddle-nose-deformity/35471-154.html)

[annekat]

I was curious as to what diseases cause saddle nose deformity and found that Syphillis and Leprosy cause it too.
Differential Diagnosis For Saddle Nose Deformity (http://en.diagnosispro.com/differential_diagnosis-for/saddle-nose-deformity/35471-154.html) It's a little disconcerting to be in the company of syphilitics, lepers, and meth and cocaine addicts. I saw some other diseases named such as relapsing polychondritis, which I've heard of but don't know what it is.

[Bek Stone]

I've heard of something called restylane, a gel like substance made from a substance that's produced in our bodies, and you have to repeat it from 1 to 4 times a year. A member named Yvonne told me about it via private message and said she could email me an article about it if I was ever interested. You could look her up on the member list, user name yvonnea, and send her a PM, or also search the term. I know others have been happy with using cartilage from the body and not had it eaten up by WG. You would have to be in remission to do it. I can also forward you the text of Yvonne's private message to me if you'd like and I might also send her a note telling her I was doing so. I don't know if that gel stuff is the same as what you are talking about, because of the part you mention about your veins growing through it.... that makes it sound more permanent, and sorta weird. Anyway, good luck if you decide to pursue this.

BTW, I do have saddle nose, and I have had both lung and sinus involvement. I don't like mine, but it is somewhat hidden by my glasses. They made me take my glasses off for my new drivers license picture, which I am not happy about at all.
Yea that sound familiar coz it was some kind of gel thing it wont b awhile til I look into that but im alittle hesitant about it as WG can b reactivated by foreign objects so my specialist and ent surgeon are going to wait and see what studies say it won't be for ages anyways im not in remission yet close but not quite. Oh and I meant those who have it localised to lungs or kidneys mot those with WG in their sinuses as well as their lungs or kidneys lol. Anyways who has WG in sinuses will get the saddle nose sorry if I wasn't clear enough lol. Yea license pics annoy me to they made me try and put my chin on my chest and it looks like I have a double chin as well as a stupid pig looking nose lol my pic is horrible. I don't need glasses yet I get the strain as you probably do as well but my vision isn't actually bad yet the drs are just monitoring them atm as I have the on start of cataracts because of the stupid steriods. How long have you had WG and how old are you and were you when you were diagnosed if you don't mind me asking that is. I was diagnosed in 2009 and I was 18.

[Bek Stone]

Oh and I have a friend thats a photographer and she took the pics for a friends wedding and she made my nose looked almost normal its the nicest pic Ive had in years http://tapatalk.imageshack.com/v2/14/11/14/0fb3bc30f883e96531cfdc796bf4d485.jpg

[Yvonnea]

Welcome Bek to the site! I am the weggie Anne told you about re. restylane to approve nose. If you want any info. just message me. Best of luck with your road to remission.

[annekat]

Yea that sound familiar coz it was some kind of gel thing it wont b awhile til I look into that but im alittle hesitant about it as WG can b reactivated by foreign objects so my specialist and ent surgeon are going to wait and see what studies say it won't be for ages anyways im not in remission yet close but not quite. Oh and I meant those who have it localised to lungs or kidneys mot those with WG in their sinuses as well as their lungs or kidneys lol. Anyways who has WG in sinuses will get the saddle nose sorry if I wasn't clear enough lol. Yea license pics annoy me to they made me try and put my chin on my chest and it looks like I have a double chin as well as a stupid pig looking nose lol my pic is horrible. I don't need glasses yet I get the strain as you probably do as well but my vision isn't actually bad yet the drs are just monitoring them atm as I have the on start of cataracts because of the stupid steriods. How long have you had WG and how old are you and were you when you were diagnosed if you don't mind me asking that is. I was diagnosed in 2009 and I was 18. Oh, no problem about the confusion about whatever. I know there are people with sinus issues who haven't gotten saddle nose, and may not, likely because they were diagnosed and treated early enough to stop or slow down disease activity before the nose got to that point. Yeah, in the past, I got to leave my glasses on for the license pics. Your photographer friend did a good job! Thanks for sharing that. Mine is not so bad from certain angles, and terrible from others. The glasses really help.

Well, I was diagnosed in 2011 at age 58. I had had 2.5 years of WG symptoms, and no one put two and two together since these were issues common in the general population. It started with a big antibiotic-resistant ear infection in both ears, which I'd never had, so should have been a clue, and I've heard of the same initial event from others on the forum. Then there were months of recurring sinus infections and voice problems, all chalked up to allergies, which made sense, because I'd had them before during my life, mainly during pollen season, though my main symptom had been asthma and not sinus stuff. I was tested and found allergic to lots of pollens, molds, and household stuff such as pet dander and dust, and took allergy shots for over a year. They seemed to help. Then in winter or 2011 I developed lung issues and thought I had pneumonia. The doc wasn't sure so I went into the hospital overnight for some tests, and by that time I was feeling really lousy all over, red eyes, headaches, tightness and hard veins in my face... but they were focusing on my lungs and I got a CT scan there. The doc there suggested I could have WG based on the results showing numerous cavitary lesions. I was to pursue that with my regular docs, so I went home with some prescriptions for pred and antibiotics and I think the very next day noticed my saddle nose! It seemed to have appeared overnight, although it could have been there longer. I had started reading the forum and researching WG online, so knew what it was. I got in with my ENT right away, the same one who had missed the possibility of WG for 2.5 years, and got a nasal biopsy which came up positive. He was very apologetic and still is. I figure if he'd caught it a lot earlier, I might not have gotten the saddle nose. Oh, well, can't do much about it now.... I also feel close to remission but that if I got off the drugs I'd probably flare, and I do seem to have a little flare every winter, right around when certain trees start to pollinate, coincidentally.

Would be nice to hear a little of your story, too, how your WG progressed and at what point your saddle nose appeared... was it gradually or all at once and did you notice any pain, etc., as it was occurring? In my case I did not.

[mrtmeo]

It's a little disconcerting to be in the company of syphilitics, lepers, and meth and cocaine addicts. I saw some other diseases named such as relapsing polychondritis, which I've heard of but don't know what it is.

Weg's could be connected to these pathogens by way of mutations which is not the same as lepers and syphilitics.
Syphilis and Leprosy were treated with potassium iodide in the old days, so it makes me wonder if weg's might have an iodine deficiency component.
In the literature, iodide was successfully used to treat vasculitic skin ulcers.
I wonder how many weg's folks eat iodine containing sea foods?

found this clinical case using potassium iodide for wegener's limitied.
http://www.ncbi.nlm.nih.gov/pubmed/7962978

[miracleshappen08]

2089 this just happened last year. It has been causing issues with breathing at night. And it can be uncomfortable sometimes.

[Bek Stone]

Oh, no problem about the confusion about whatever. I know there are people with sinus issues who haven't gotten saddle nose, and may not, likely because they were diagnosed and treated early enough to stop or slow down disease activity before the nose got to that point. Yeah, in the past, I got to leave my glasses on for the license pics. Your photographer friend did a good job! Thanks for sharing that. Mine is not so bad from certain angles, and terrible from others. The glasses really help.

Well, I was diagnosed in 2011 at age 58. I had had 2.5 years of WG symptoms, and no one put two and two together since these were issues common in the general population. It started with a big antibiotic-resistant ear infection in both ears, which I'd never had, so should have been a clue, and I've heard of the same initial event from others on the forum. Then there were months of recurring sinus infections and voice problems, all chalked up to allergies, which made sense, because I'd had them before during my life, mainly during pollen season, though my main symptom had been asthma and not sinus stuff. I was tested and found allergic to lots of pollens, molds, and household stuff such as pet dander and dust, and took allergy shots for over a year. They seemed to help. Then in winter or 2011 I developed lung issues and thought I had pneumonia. The doc wasn't sure so I went into the hospital overnight for some tests, and by that time I was feeling really lousy all over, red eyes, headaches, tightness and hard veins in my face... but they were focusing on my lungs and I got a CT scan there. The doc there suggested I could have WG based on the results showing numerous cavitary lesions. I was to pursue that with my regular docs, so I went home with some prescriptions for pred and antibiotics and I think the very next day noticed my saddle nose! It seemed to have appeared overnight, although it could have been there longer. I had started reading the forum and researching WG online, so knew what it was. I got in with my ENT right away, the same one who had missed the possibility of WG for 2.5 years, and got a nasal biopsy which came up positive. He was very apologetic and still is. I figure if he'd caught it a lot earlier, I might not have gotten the saddle nose. Oh, well, can't do much about it now.... I also feel close to remission but that if I got off the drugs I'd probably flare, and I do seem to have a little flare every winter, right around when certain trees start to pollinate, coincidentally.

Would be nice to hear a little of your story, too, how your WG progressed and at what point your saddle nose appeared... was it gradually or all at once and did you notice any pain, etc., as it was occurring? In my case I did not.
I've posted a discussion that tells most of my story but the saddle nose came on gradually for me getting worse and I to have had problems with sinus infection and inner ear infections and UTIs but they found my WG pretty fast but I didn't respond to most of the treatment so its taking awhile to get into remission but mine is only in my sinuses I guess I'm lucky mine isn't anywhere else.

[annekat]

I've posted a discussion that tells most of my story but the saddle nose came on gradually for me getting worse and I to have had problems with sinus infection and inner ear infections and UTIs but they found my WG pretty fast but I didn't respond to most of the treatment so its taking awhile to get into remission but mine is only in my sinuses I guess I'm lucky mine isn't anywhere else. Yes, I read your introductory story... you may be lucky to only have WG in your sinuses, but you sure have been through a lot of medical issues in your life. I'm so sorry Wegs had to hit you too, at such a young age. I'm glad you feel the Mabthera is working and you may be in remission soon. Things could really look up for you then. I hope so.

Strange how we are all different, your saddle nose happened gradually and mine showed up all of a sudden, with no pain or warning. I guess maybe it was happening earlier but I just didn't notice it. The doc in the hospital, two days before I discovered it, didn't say anything. Sometimes I think doctors just aren't very observant.

[Bek Stone]

Yea I agree with you there most times when I see my dr and I tell him whats been happening he just goes 'hmmmm' nods and writes stuff down lol he is a good dr tho but when I go to the PA hospital in brisbane because their board has to approve the mabthera I feel like its a big waste of time you wait all day just to see a registrar who doesn't know anything about WG and makes you feel like a guinea pig lol. My saddle nose does hurt its tender when you touch it but doesn't really hurt do you have the constant headache as well and they just vary in how bad they are?? And learnt to just deal with the pain? Coz I've just learnt to put up with it I know I should b sympathetic to people in pain but some people have a very low pain threshold and constantly complain when really they don't know pain like us with WG this is people who haven't got anything wrong with them I mean not those who have an illness lol do you fe like that sometimes I know I should but sometimes I feel like saying here have my head for a while and then tell me I don't know what pain is.

[annekat]

My saddle nose doesn't hurt to touch it at all, only once in awhile I feel a little twinge of pain in there and it makes me worry that the nose might collapse further but it never does. And I don't have headaches or any sinus pain like a lot of people do. I did have severe headaches when I was first diagnosed, but they went away with treatment. I started with CTX and it worked for me. I'm on MTX now. As for sinus pain, when my ENT told me my sinus bones had eroded away to where I no longer had sinus pockets where stuff could collect, that my remaining tissues in there were so well healed that I wouldn't have any more problems with sinus infections or pain in that area. I guess I feel pretty lucky, but also a little guilty for not having pain where others do. I was told at the dentist once that I have a high pain threshold, a tooth had broken and was hanging by a thread, and I wasn't hurting like they all thought I should be. So maybe that's part of it.

[cjhnsn29]

I also am one of the lucky ones with the saddle nose. I wear glasses and people don't notice it as much. Children always seem to notice and come right out and say what's wrong with your nose, it's not right.... I also am one of the lucky ones that can't taste or smell. Kinda sucks but I think of it this way, Somethings I am great full not to smell.. When people find out that I have WG they say you wouldn't even know you are sick. You are always so happy and fun never complain. My response is what can you do be miserable and have no one want to be around you. I have had a total of 13 surgerys so far and just found out I need two more... I just tell the Dr's I am the queen of surgerys. I had to go to a new Dr due to Fl state law. I have to see a pain management Dr now... He said I seem so POSSITVE and ask me if I ever seen a psychology Dr. I said no I really can't afford to see anymore Dr's I have 12 now and can't afford anymore.. The saddling of my nose, they stated they would have to take a piece of bone out of my hip to build it back up but it's a long wase away.... They have to make sure they keep all the infection down and under control. I am glad I am able to talk to people who have WG cause you are more likely to understand. Noone is as understanding like we are. C.J