What is crusting?

[annekat]

I have the saddle nose and the crusting, but never thought of them as related in a cause-and-effect way. The saddle nose is caused by lack of oxygen in the blood vessels and cells, causing tissue death and holes in the septum, making the cartilage lose its support and drop, as I understand it. Anyone can correct me or add to this.

[malin]

Am fairly sure I've now developed crusting. This morning my nose felt blocked and "full up" so I blew my nose and this large, flat chunk came out with blood all over it, after that I had a nose bleed. (I've probably only ever had 2-3 nose bleeds in my entire life so far). My nose is now sore to touch, still feels blocked and "full" and when I feel with my finger there are hard crust or scab feeling things in both my nostrils, it doesn't feel like it starts that far back into my nose but is more at the "opening" of my nostrils but then the "fullness" feeling is all the way back to my sinuses.

I can't see my ENT until the 15th of August so am very worried now :/ What should or shouldn't I do if this really is crusting?
I've ordered the neilmed rinse thing, should be here tomorrow.

[annekat]

Am fairly sure I've now developed crusting. This morning my nose felt blocked and "full up" so I blew my nose and this large, flat chunk came out with blood all over it, after that I had a nose bleed. (I've probably only ever had 2-3 nose bleeds in my entire life so far). My nose is now sore to touch, still feels blocked and "full" and when I feel with my finger there are hard crust or scab feeling things in both my nostrils, it doesn't feel like it starts that far back into my nose but is more at the "opening" of my nostrils but then the "fullness" feeling is all the way back to my sinuses.

I can't see my ENT until the 15th of August so am very worried now :/ What should or shouldn't I do if this really is crusting?
I've ordered the neilmed rinse thing, should be here tomorrow.

I wouldn't worry, I'd just do what you are planning to do, use the sinus rinse, I'd say twice a day, and see your ENT. I think crusting is a normal part of sinus involvement with Wegs.

Here's another thing I'd recommend you try: Get a bowl of steaming hot water, add some mint leaves to it, or eucalyptus, or some other herb, or plain salt to make the water less harsh. Lean over the bowl with a towel over your head and breathe that in for several minutes. Just be careful the water isn't too hot, so as not to singe the linings of your nose; if it is, raise your head up higher until it's comfortably warm. This will help loosen the crusts and chunks and make them easier to rinse out. Do this before the sinus rinse.

One more thing: Guaifenesin is an herb from a tree bark and the main ingredient in Mucinex, brand name in the US. There are generic forms available. This will thin the mucus and make it easier to drain but will not completely solve the crusting problem.

I've been doing all of these things since way before my dx, when I thought I was just having one sinus infection after another. My ENT suggested all of them except the steamy water bowl. I no longer do that much, because things have gotten better. When you see the ENT, he or she may suck some of the stuff out of your sinuses with a device, as mine has done a couple of times.

[JanW]

I had some crusting before diagnosis, none at all after I was successfully treated, and I also had a saddle nose (now repaired). I don't think that the two were connected. The saddling is caused by lack of blood flow to that part of your nose (cartilage) resulting in tissue death. When they repair it, they have typically done it with rib or skull bone because that's much stronger (and it's bone!) than cartilage so you have a bit more leeway if you have another flare (although they can, and do, collapse again).

[freakyschizogirl]

I find that interesting JanW - i still have crusting now but had it 3 years before diagnosis. I have been told it may never get better as this was caused by 'previous damage'. I have the saddle nose and a hole in my septum. Surgery coming my way at some point in the nearer future!

Does crusting go away after the saddling etc is fixed? Or will it always be there?

[JanW]

For me, crusting was the first thing that went away after successful treatment. Even before I entered a true remission (as in bloods looking good), my crusting completely cleared up (this was probably within six weeks of going on mtx (no pred). I was definitely told that the crusting wasn't any kind of permanent feature of WG and meant active disease. So, when I had my saddle repairs, I showed no signs of active disease and hadn't for more than a year (optimal conditions for actually undertaking the operation). I still have the occasional aches and pains, and the wonky ankle (although with exercise this is improving as well) but no sinus involvement since I have been medicated.

[pberggren1]

Crusting is like Wegs. No way to predict it. It might get better with a nose fix, but no way to know for sure.

[freakyschizogirl]

Crusting is like Wegs. No way to predict it. It might get better with a nose fix, but no way to know for sure.

Thanks Phil, My crusting hasnt got better after a year of treatment so i guess i'm stuck with it

[Sangye]

I don't think saddle nose and crusting are related. Many people with Wegs have crusting, and it often lasts for years even in remission. However, few Weggies develop a saddle nose. If there were a connection there would be many more Weggies with saddle noses.

[Sangye]

Malin, reading your post about the huge chunk of crusting reminded me of advice that Jack frequently gave. He had a chronic problem with crusting even though he was in remission for a long time. He said that in his earlier days he had done damage to his nose by blowing too hard to get the crusts out and advised people to use sinus rinses to gently flush them out instead.