Saddle Nose.....

[bradders66]

Hi I was diagnosed with WG in July 2011. It is limited to my nose and sinus and I was on 40g pred and slowly reducing now down to 7.5g.

I was suffering with intense facial pain. Since being on medication the pain originally went but since December I've had what I call a lot of sensitivity in my nose. This has gradually increased to occasional shooting pains though not enough to warrant pain killers.

My question is, can you stop saddle nose happening?

Is the sensitivity/pain a sign of saddle nose?

Does saddle nose happen overnight? Or is it a gradual collapse of the nose?

[lisa-ranyell Vasculitis UK Volunteer]

Hi bradders

I was diagnosed oct 2006 and my initial symptoms were very much like yours but with ear problems too. My saddle nose happened over the first 3-4 months and was quite gradual. It wasn't really the sensitivity that was a sign it was the sores and crusting/bleeding inside the nose which caused my collapse, do you have sores etc? Unfortunately you probably can't prevent the collapse although it does not happen to everyone. Once my WG was stabilised though I was able to have surgery to improve the shape so it is not the end of the world. I wonder if your disease is stable enough to be on such a low dose of pred but that is between you and your specialist. Feel free to message me if you have any questions.

Regards

Lisa

[PatriciaAnn]

Hi Bradders

I don't have saddle nose but what I do have is quite a "dip" in the bridge of my nose (thankfully hidden by my specs) and also I have a hole in my septum - all caused by the WG. Like Lisa I suffered with awful crusting and bleeding. I never had any pain in my nose just this awful stuffed up and bunged feeling. It's nearly nine years since I was diagnosed and the shape of my nose hasn't altered all that much in the past seven or eight. So saddle nose isn't something which happens to us all.

As for doing anything to prevent it happening, sorry, but I don't think so.

PatriciaAnn

[Essex-jill]

Hi Bradders.

I was diagnosed with WG approx 13 years ago and have quite bad saddle nose deformity. Mine happened over about 6 months, I developed breathing problems, severe nosebleeds, facial swellings and despite going to my Gp to complain about these ongoing symptoms which she ignored .I was finally diagnosed about a year later and by then I had developed what I now know as saddle nose deformity and nasal perforations.

It's so important to get diagnosed early to avoid long term damage and to monitor your own body and be aware of any changes developing after diagnosis and to speak to your consultant to make him aware ASAP of your concerns.

I attend Addenbrookes hospital vasculitis clinic and also see an ENT specialist dealing with the damage. The problems I experience are nosebleeds and crusting. I use Bacroban nasal cream, to help reduce nasal infections which i'am prone to and do nasal douching three times a day. I do suffer from facial pain and swelling under my eyes due to the damage.

I have been offered surgery to correct the saddle nose but I was warned the procedure is not always successful. My nose has not got any worse since diagnosis, though I have developed another septal perforation.

Hope this may help.

Jill x

[Llinos]

Hi Bradders, I've had WG for 12 yrs now. I had no idea about my nose until I dragged myself into a bathroom in hospital after collapsing at home and screamed out loud at the sight of my nose. I think I was in so much pain with my face and worry over my increasing deafness that i just didn`t see it.

My thanks to Proff Nick Jones in Queens , Notts for giving me 2 new noses. Got headbutted by my 9month old god daughter and infected my first graft!!!

[hamble99b Volunteer]

mine was gradual after severe nosebleeds [ut to & over 60 minutes; huge crusties; pain and discomfort. I have WG.

[louisej]

I am worried about the same had WG since 2012 and still have bad crusting and recently pain in the side of my nose going to my eye. I worry that my nose may collapse.

[cookie61]

I too am worried about the effect WG has on my nose like many others that is how this all started last May but wasn't diagnosed till October 14. I have the typical symptoms of blocked nose,tenderness in my face and nose and constant crusting but not too many nosebleeds but over the last 2 months i have this disgusting smell in my nose like everything up there is going bad and my ENT man told me it will go away in time but it really worries me and now my husband says it can smell me at times which has now made me very self concious. Has anyone else ever experienced this problem as i would be interested in knowing how long it will last.