What is crusting?

[malin]

This might seem a silly question to some, but I've always wondered and never fully understood what "nasal crusting" is?

Sorry if this sound gross but is it anything like dried snot, like it sticks to the inside of your nose or is it something "further" up inside your nose? How do you know what's crusting and whats just snot from a cold or something similar like that?

:sad:

[Jack]

It is dried mucus / blood / other discharge and during a bad Wegener's flare it can build up all the way through your nasal cavities back to the sinus and throat areas. There is no hope of breathing through it and when flushed out with saline the plugs can be almost as big as your little finger. If you are tempted to grab the end and pull it out, not only will it probably cause a bad bleed, but it feels like you are pulling your brains out! :scared:

[malin]

YIKES!

Well, that makes me feel a bit better about the dried little lumps of snot I keep getting at the moment, I was worried it might be "crusting" but from the sounds of it, I think its just dried snot caused by the dryness of my nose at the moment. My nose is sooo incredibly dry it's driving me crazy! Think it might be central heating n stuff that is causing it at the moment...

[DEE]

Great explnation Jack thats totally how it feels like, at its worse i did the helping along bit !!! scared myself silly :w00t: stick to douching now and yes im worse when central heating is on
intetesting time in our house i turn it down because of nose and hubby turns up because he is cold :biggrin1:

[freakyschizogirl]

And i bet the nose wins in the end DEE. hahaa!

I did a lot of damage to my nose by "helping" the crusting along. Stick to the saline solution now which is far more gentle by comparison.

[Hammy8241]

YIKES!

Well, that makes me feel a bit better about the dried little lumps of snot I keep getting at the moment, I was worried it might be "crusting" but from the sounds of it, I think its just dried snot caused by the dryness of my nose at the moment. My nose is sooo incredibly dry it's driving me crazy! Think it might be central heating n stuff that is causing it at the moment...

My ENT man recommended STERIMAR or NASOGEL to help with dryness. Never tried them though. Anyone?

[DEE]

Sure does :rolleyes1: for some reason when mine is bad i tend to get the sneezzes sp and it sorts its self out :flapper:

[DEE]

Not heard of them Hammy but just remembered last time i went to WG consult he tokd me not to use Naseptin Nasal cream

[Geoff]

Sure does :rolleyes1: for some reason when mine is bad i tend to get the sneezzes sp and it sorts its self out :flapper:

Likewise DEE, I get something approaching 8 on the Richter scale with my sneezing. It works a treat tho!!

[DEE]

ROTFL can not believe im sat here having a coversation about snot and crusting this is what WG brings us to :rolleyes1:BUT it brings great friends to laugh about theses things with :thumbsup:

[LisaMarie]

Jack
Atleast you have brains to pull out...lol...mine are all ate up by pred...i use a warm to slightly hot sinus toilet to clean out my nose and the crusty.....and it is not always a pleasant experience ...but i do at times see some interesting things from a nursing prespective...lol

[ArlaMo]

The first time I got one, I was shocked! And slightly sickened by the sight of the crusts. Now, I'm pretty used to them.

I saw an ENT (Dr. Knott) when I was out at the Cleveland Clinic in January and he has me using mupiricin 2%, mixed thoroughly into a liter of saline, and then I use a 50cc toomey syringe to irrigate my nose with the mixture a couple of times a day. They also have a nasal cream that the CCF pharmacy makes that I am using. I was doing neti pot and Pretz spray prior to my CC visit, but Dr. Knott said it wasn't quite aggressive enough for Wegs patients with heavy sinus involvement.

[freakyschizogirl]

My ENT man recommended STERIMAR or NASOGEL to help with dryness. Never tried them though. Anyone?

I was recommended Sterimar by the so called ENT consultant, its pants. It takes an awful lot more effort as its made with sea salt water, so for one thing it isnt as soft on your nose as saline and two it doesnt shift our hardcore crusting! Stick to the neilmed, that is my advice anyway. I wasted my money on Sterimar for years.

I have seen some startling things coming out of my nose. I was thinking of saving some and comparing cos it really is shocking sometimes just how big the crusts are! Nice to know there are people out there who suffer as much as i do!

And Geoff my sneezing used to be legendary in my last workplace. People eventually stopped blessing me! And then you get thoe who look at you like you are passing on the plague one sneeze at a time. Gotta laugh.

[Jack]

ROTFL can not believe im sat here having a coversation about snot and crusting this is what WG brings us to :rolleyes1:BUT it brings great friends to laugh about theses things with :thumbsup:
Apart from an ENT, who else could you discus this sort of subject with? The same goes for some of the other more gross aspects of Wegener's. "Normal" people don't want to hear it.

[DEE]

To right Jack , how are you doing at the moment

[Jack]

Having quite a good day (for me) today. :thumbup:

Hope everyone else can say the same.

[drz]

My ENT man recommended STERIMAR or NASOGEL to help with dryness. Never tried them though. Anyone?

I don't know about those specific products but any thing that contains thin KY jelly should work good to relieve drying in nasal passages. The tubes work fine and are much cheaper but you then have to insert the jell with fingers or q-tip. In nursing home and hospital they used surgical jell inserted with q tips to keep my nasal passages from drying out. This also helps prevents the severe nosebleeds when a dry crust comes lose.

[pberggren1]

Some of the chunks I get out are still large, even the size of my whole pinky finger.

[freakyschizogirl]

Some of the chunks I get out are still large, even the size of my whole pinky finger.

i know that feeling!

[Psyborg]

Thanks for this topic, though it's rough at breakfast :p But this really helps me to understand that I don't appear to have any sinus issues of note at this point :)

[Jack]

Some of the chunks I get out are still large, even the size of my whole pinky finger.
Mine were only like that when I had active disease. It reduced to practically nothing when the Wegener's was knocked on the head.

[freakyschizogirl]

Cant wait for the day i have no crusting, i will go out and celebrate!

[chrisTIn@]

I hope you will, Freaky!

@Malin:
I never had the kind of 'big' crusting as described by some on this thread.
I just had small spots of blood in my tissue, when I blowed my nose,
my muccous membrane was very dry, and I had little wounds in my nose,
with dried-up tissue, that hurt when I tried to remove them.

It's gross, but indeed it is good to have a place to talk about these nasty things. :wink1::biggrin1:

[Ginger]

Ohmygoodness.... I was diagnosed last november, and before i started treatment i would have that! I had no idea it was becuase of the wegeners though! WOW that explains why i don't have it anymore lol

[freakyschizogirl]

Lucky you Ginger!
I had 3 years trying to convince my ENT's that my crusting was more than "just in my head" or "something you'll just have to live with".

The day i'm free of crusting drinks are on me!

[Sangye]

Ginger, do you mean your docs have never told you about that? If so, I'm appalled. It's a "classic" sign of Wegs, that any doctor--even those who are totally unskilled in treating Wegs-- would recognize.

[Daggar]

A classic case of "Ginger" not listening to all that is being said by her doctors. Her original symptoms were sinus and joint problems both of which disappeared quickly once the meds were started so it may be that she/we are so focused on the kidney issue that everything else is secondary at this time. She was thoroughly checked over at the Nephrology/Rheumotology clinic every week while doing her lab work for the first two months. That included nose, throat, eyes, ears, joints, nerves, skin, etc. They'd check for any form of facial pain that would indicate inflammation. "Ginger" just happens to be one of the lucky ones where the meds eliminated all symptoms rather quickly -- except the kidney damage -- so she is now remembering the old symptoms before treatment.

In her defense -- it is a lot for a 14-15 year old to soak in while being as sick as she was. I think she was listening more to what the meds could do to her -- moon face, weight gain, fertility issues, cancer risks, etc.

Trust me -- I don't think anyone could receive better treatment/care than she has.

[Sangye]

LOL I didn't realize "Ginger" was Holly.

[JanW]

This is going to be interesting -- a mother and daughter on the forum together!

[Sangye]

LOL Daggar is Holly's dad! It's totally confusing. :blink: :laugh:

[JanW]

Whoops! My bias is showing, assuming that the MOM would be on here posting.

Apologies, guys!

[Daggar]

No apology necessary Jan -- it may be MORE entertaining! I just happen to have the luxury (or misfortune--depending on how you look at it... just kidding Ginger!!) of working from home or the office. The wife can't so we decided early that one of us would be the main caregiver to eliminate any confusion with meds, diet and communication with all these doctors that she has. Holly is now getting to the point where she is handling more and more so now I have to learn to "back off" as they say.:unsure:

[chrisTIn@]

Ginger, do you mean your docs have never told you about that? If so, I'm appalled. It's a "classic" sign of Wegs, that any doctor--even those who are totally unskilled in treating Wegs-- would recognize.

Still my GP didn't recognize it.
When I finally had the diagnose (from an internist, I was very lucky that she had worked with a Wegs specialist while she was in training, as a student) I came back to my GP and told him.
He had to look on his computer to see what Wegener's Granulomatosis is all about. He didn't have much knowledge about it.
I could have gone undiagnosed forever...:crying:

[Bren]

Jack,
that is a real definition of a brain tugger.. :smile1: but Jack u explained very well !!

[Sangye]

chrisTin@, that's different. Nasal crusting doesn't necessarily indicate Wegs. Tons of things can cause it. Unless there's obvious lung or kidney trouble, no doc would think of Wegs. In diagnosis classes the only thing you learn about Wegs is "rare, autoimmune, sinus-kidney-lungs." This tiny bit of info is among literally hundreds of diseases and conditions that you learn in great detail. So unless a patient presents with all three, there is very little to inspire a doctor to think Wegs.

The reason I was shocked by Holly's comment was that she was already diagnosed with Wegs and it sounded like no one had told her the crusting was part of it.

[Ginger]

Still my GP didn't recognize it.
When I finally had the diagnose (from an internist, I was very lucky that she had worked with a Wegs specialist while she was in training, as a student) I came back to my GP and told him.
He had to look on his computer to see what Wegener's Granulomatosis is all about. He didn't have much knowledge about it.
I could have gone undiagnosed forever...:crying:


OMGEE same story for me..... i had gone to my GP for awhile with my symptoms and had an apointment for the next week. Then, i went to the ER......It's scary to think if i hadn't gone to the ER that day, and just dealt with it, i would have gone undiagnosed! EEEK:scared:

[Ginger]

LOL Soorry for the confusion haha..... I did know that crusting was part of Wegs, it's just that it never registered to ME that I had it until i had a clear mind and noo crusting.... wooooowww i probably sound really dumb.. but just had to clear that up haha

[malin]

I know this is an old thread but I thought it better to revive it than start a new one :p

I am wondering, does crusting in nose mean saddle nose eventually? Or is saddle nose a completely different part?

[pberggren1]

They can be totally unrelated Malin. I had crusting and bleeding for years with major mucus production before my saddle nose came along. And I have also seen Weggies with years of crusting with no saddle nose. Wegs is totally unpredictable.

[mishb]

They can be totally unrelated Malin. I had crusting and bleeding for years with major mucus production before my saddle nose came along. And I have also seen Weggies with years of crusting with no saddle nose. Wegs is totally unpredictable.

That's me too Malin.......... but without the saddle nose.

[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.

[drz]

Crusting can mean different things to people. Bloody crusts that bleed with visible blood are more indicative of active or at least residual Wegs activity. Very little flecks of blood in rinses might result from dried mucous that has stuck to inside of nasal passages and cause a small amount of bleeding when it is dislodged. The more gentle the rinses, the less likely for this type of crusting to result in visible bleeding. Once Wegs has attacked your sinuses they are damaged so the mechanism to move mucous out doesn't work like it did before and the mucous will collect and dry onto inside of nasal passages. When these crusts that have built up are dislodged, bleeding can result even if the Wegs is in remission. Trying to keep the nasal passages moist and trying to avoid forceful dislodging of crusts should help reduce the problem and trauma inside the nose. Using humidifiers when air is dry, saline sprays, nasal rinses, and even insertatiion of a surgical jell or other moistening agent to soften crusts and help prevent them building up can all help reduce crusting problem.

I have a long history of ear and sinus infections before I got the Wegs which really made things much worse. I learned the above info from hundreds of visits to various ENT doctors over many decades. My worst nose bleed happened a year or two before I got diagnosed when an ENT doctor that didn't suspect Wegs thought he could help stop my crusting by cauterizing the area. When that scab dislodged, I spent the night in ER trying to stop a huge nosebleed.

[annekat]

Thanks for the comprehensive overview of crusting, drz. Sounds like I've tried a little too hard to get the crusts out sometimes and will try to be more gentle. Sorry you had that bad experience with that particular ENT doc! Sounds awful.