how many of us have saddle nose ?

[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

[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

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

[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]

ImageUploadedByTapatalk1415990233.357076.jpg 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.