Hi I'm new

[Louisexx]

Hi everyone I have been diagnosed with WG in December found this site thought I would say hi
And I just wanted to ask if anyone knows when saddle nose happens does it do it slowly or just collaps as my nose is changing thanks Louise 

[pberggren1]

It can happen very fast or take several flares for it to happen. Each case is very different. We are all individual.

Welcome to the Forum Louise. Please feel free to tell your story.

[JanW]

Mine definitely collapsed over time, and it probably took a year to completely collapse. I just had mine repaired last month.

[annekat]

Welcome, Louise. This is a really great site, and I'm glad you found it. I don't know when my saddle nose happened or how fast. I just noticed it one day right before diagnosis. No one else did, as it is relatively moderate and my glasses hide it well, and it may have happened gradually. But I do worry that it might get worse, as my sinus area is my biggest continuing problem and sometimes I feel tingling around the bridge of my nose.

We'd be glad to hear more about your WG and what you are going through. Ask any questions anytime and also use the search function. There are several on here who are very knowledgeable and many who have been through similar things to what you are experiencing.

Anne

[Louisexx]

Hi thanks everyone for replying,
I got WG in my top half if that makes sence,mainly with my sinuses on the right side of my face,it has all gone numb and the doctors said I have got nerve damage and may not come back. With my nose it's really small and it doesn't have a bone in it lol so I think it is collapsing,I don't no how they would fix it as it's not a normal nose in the first place so I am quite worried.I can't wait to come off the medication as I'm so down with the weight gain and the acne thanks again louise

[mishb]

Hi Louise and welcome to the "group".

Mine is mainly sinus involvement, and I also get a red bloodshot eye and have reduced hearing ........ all on the right side.
No saddle nose and even though I can see little changes in the shape, my ENT says that it probably will never happen and therefore, I guess there is no point in waiting for the what if's.

I hope you have had a quick response to your medications and that you are starting to show some improvement.

Take care

[Louisexx]

Hi there I had the medication in december and for a couple of weeks now I have been feeling so much better,I did go completely deaf at one point but when I had infusions of steroids it came back but still very hard of hearing xx

[annekat]

Hi there I had the medication in december and for a couple of weeks now I have been feeling so much better,I did go completely deaf at one point but when I had infusions of steroids it came back but still very hard of hearing xx A lot of us, including me, have hearing problems. Some eventually get their hearing back, and others don't. I hope you are one of the lucky ones who does!

Anne

[Dryhill]

Louise, welcome to the forum, it is nice to have another Brit join our merry group. How is sunny downtown Pompey, it is about nine years since I was last there?

Jim

[Al]

Louise--since others can talk about saddle noses better, I'll just say welcome and hi!

Al

[Sangye]

Hi Louise, welcome to the group. We have a handful of members who have saddle noses. They're the experts on how/ when it happens.

[pberggren1]

Hi Louise, welcome to the group. We have a handful of members who have saddle noses. They're the experts on how/ when it happens.

I've fallen off the saddle and can't get up.........lol.

[annekat]

I've fallen off the saddle and can't get up.........lol. Do you have a saddle nose, Phil? Just curious, and hard to tell from your picture.

Anne

[Al]

Hi everyone I have been diagnosed with WG in December found this site thought I would say hi
And I just wanted to ask if anyone knows when saddle nose happens does it do it slowly or just collaps as my nose is changing thanks Louise Welcome to our fun little group, Louise! I do not have appreciable sinus involvement myself, though a lot of our members have a lot more experience with saddle noses and such than they would like to. I will let them respond to your direct questions. But we all tend to leap in when we have what we believe to be a useful tangent....

Al

[pberggren1]

Do you have a saddle nose, Phil? Just curious, and hard to tell from your picture.

Anne

Yes, I have saddle nose. The picture is from 2006.

[annekat]

Yes, I have saddle nose. The picture is from 2006. Thanks for answering that, Phil. It was kind of a personal question. But since I have one, too, I'm interested in knowing who else has one.

Anne

[Dryhill]

I've fallen off the saddle and can't get up.........lol.

Phil, you really should give up the alcohol. :flapper:

Jim

[pberggren1]

The vodka is the hard one to give up.

[Natalie]

Welcome Louise , Another saddle nose here :) I got mine gradually But got extreamlly sore very quickly which lead to my diagnosis .

[Louisexx]

Hi thanks for replying how long did it take before it collapsed and what do you mean by sore as in the inside or were it collapsed thanks xxx

[chrisTIn@]

Just wanted to say hi too, and welcome! :smile1:
You can find a lot information on this forum, also in older posts...

Can't help you out on the saddle nose, sorry.
I haven't got one (yet), but I worry about my nose sometimes too.
I've got the idea that the bone has gotten thinner...

[drz]

Just wanted to say hi too, and welcome! :smile1:
You can find a lot information on this forum, also in older posts...

Can't help you out on the saddle nose, sorry.
I haven't got one (yet), but I worry about my nose sometimes too.
I've got the idea that the bone has gotten thinner...

One ENT doc told me one of the first signs of trouble is when you get a hole from the erosion that is slowly eating away at inside of your nose.

[mama2005]

Hi, I had a saddle nose and just had it fixed three weeks ago. My saddle nose was gradual change it started shortly after I found out i had a hole in my bridge it gradulay feel and the tip of my nose turned up. Things that I had problems with was bleding at least three times a day, crusting of the nose, and also painful to touch the nose. Hope this helps and I hope you start geting better

[annekat]

I also have a hole in the bony part of my septum, which was a pretty small one and wasn't discovered until after the saddle nose became apparent. The cartilage which forms the bridge is attached to the bony part, so a hole in the bony part can take away the support for the cartilage, making it drop and causing a saddle nose. Mine did not warn me with any pain. I just noticed it one day. If an ENT doc can find a hole in your septum, that could be an advance warning for a saddle nose. I got the feeling the hole could be either in the cartilage or the bony part of the septum.

[drz]

I also have a hole in the bony part of my septum, which was a pretty small one and wasn't discovered until after the saddle nose became apparent. The cartilage which forms the bridge is attached to the bony part, so a hole in the bony part can take away the support for the cartilage, making it drop and causing a saddle nose. Mine did not warn me with any pain. I just noticed it one day. If an ENT doc can find a hole in your septum, that could be an advance warning for a saddle nose. I got the feeling the hole could be either in the cartilage or the bony part of the septum.


Is there anything that can done at this point to stop the erosion or to avoid further collapse?

[Debbie C]

Does everyone get a saddle nose from this ? Right now it has only effected by lungs mostly ( I go for another scan in a couple of weeks ) but latey I have been having problems going to the bathroom and I hear alot of people with kidney and renal failure so know that is putting the fear of God into me since the only thing he has me on is 10mg. of prenisone and the only thing that is doing is making be a swollen B.... !!!! Are there any signs if your having those other problems?

[annekat]

Is there anything that can done at this point to stop the erosion or to avoid further collapse? I don't know. I would assume proper treatment with Wegs drugs would stop the progress, but I don't know that a future flare-up couldn't start it up again. Maybe every case is different. In my case, I hope the bridge has dropped as far as it can and won't go further. I think the original shape of someone's nose, how much of a bridge they had to begin with, and the original length or angle of the nose, could affect the appearance and extent of the saddle nose. That is my uneducated guess based on seeing different pictures of saddle noses.

[annekat]

Does everyone get a saddle nose from this ? Right now it has only effected by lungs mostly ( I go for another scan in a couple of weeks ) but latey I have been having problems going to the bathroom and I hear alot of people with kidney and renal failure so know that is putting the fear of God into me since the only thing he has me on is 10mg. of prenisone and the only thing that is doing is making be a swollen B.... !!!! Are there any signs if your having those other problems? No, everyone doesn't get a saddle nose. Just some of the people with sinus involvement. I think those with saddle nose on here are in the minority, though many have sinus involvement. I think it is a matter of how soon your Wegs was caught. I had it 2 or 3 years before dx, so plenty of time for the septum to become eroded.

[Al]

Does everyone get a saddle nose from this ? Right now it has only effected by lungs mostly ( I go for another scan in a couple of weeks ) but latey I have been having problems going to the bathroom and I hear alot of people with kidney and renal failure so know that is putting the fear of God into me since the only thing he has me on is 10mg. of prenisone and the only thing that is doing is making be a swollen B.... !!!! Are there any signs if your having those other problems? Debra, this may be a fairly simple UT infection (not that this isn't serious), but in your case there is enough risk of a WG connection that I would hie myself to the nephrologist (definitely the nephrologist, and make sure, when scheduling, that the scheduler knows of the WG diagnosis, stressing the lung business) first thing in the morning. Kidney issues, when they come, can come very fast, are often symptom-free until it is too late, and they are usually not reversible. Is this enough of the fear of God? So kick me if this turns out to be nothing, but Weggies are allowed, and, in my opinion, required to assume the worst. At worst, you have donated a small bit of your blood to scientific curiosity (a renal panel, at least, is needed--possibly some other tests as well), and had to pee into a cup (to check for blood and protein).

Al

[Natalie]

Hi thanks for replying how long did it take before it collapsed and what do you mean by sore as in the inside or were it collapsed thanks xxx if my memory serves me right It took about 4-5 months ?? give or take to collapse. With the pain I had It was where it collapsed , Just lightly touching my nose would be ridiculous pain ! never forget that , hope this helps Louise :)

[Widthofacircle]

Hi Louise
Thankfully I have not experienced saddle nose so will just say Hi and welcome
Brendan

[NicShaf]

Welcome Louise!

[Lightwarrior]

Welcome Louise, I'm glad you found us.

[Debbie C]

Hi Louise....I'm pretty new here too but every seems so nice and knowledgeable (sp?) I think I got more info here then I do from my docs.

[annekat]

Hi Louise....I'm pretty new here too but every seems so nice and knowledgeable (sp?) I think I got more info here then I do from my docs. I DEFINITELY get more info here than from my docs!