Where are my fellow "crusters"?

[NikkiNicole]

Hello everyone,

For those of you experiencing nasal crusting, I have a question. Mine appears to be getting worse. In fact, sometimes, I can't even touch the right side nostril opening because it's so stiff and tender. I rinse, and things get moist but I wake up in the night feeling like I have sand dunes in my nose.

Now ... things are more painful. I couldn't breathe clearly through my nose and took a quick tissue to remove some of the crusting and ... surprise ... blood came a-gushing out my nose. It stopped after abnout 10 minutes or so and I continued on my day.

Fast forward to a little bit ago at work, I had to do the same thing and it happened again. Unfortunately, it dripped rather quickly all down the front of my sweatshirt before my co-worker could toss me the tissue box. We are only allowed to be out of the room one at a time so I shoved a tissue up my nose and continued to work.

Anyone else have crusting like this? This is how it was at the beginning of my long illness that became Weg's. This is how it was back at the beginning of this year when the nasal issues became worse. When I've gone in to see my ENT he just says it's "dry". Well ... it seems no amount of rinsing, saline moisturizing spray, saline cream, or vaseline is helping. And it's not dry ... there are scabs and hard stabbing crusty things in my nose making it difficult to do anything. Dry to me would be just dry ... I don't know.

I just dread going to the ENT again!

Red eyes are diagnosed as "dry eyes" when I have them. Bloody crusty nose diagnosed as "dry" when I go there! Grrr. I'm not a happy girl right now.

[Alysia]

Hi NIkki, I had exactly the same state for yesrs. Crusting and bleeding and pains...
Can you smell ? ENT can't help. All these are 'activity' of WG. You should ask your wg doc about it. Maybe you need some change in your treatment. In my case, only RTX helped me. All the rinses and ointements only made things worse. How much time are you on MTX already?

[Titus3:2]

I agree with Alysia.The symptoms you are having were always alarm bells for me.Sorry you are having to deal with this.I would be demanding prednisone it always worked short term for me.

[gilders]

For most of the 19 years since I was diagnosed I have had crusting. To me this crusting is like a mixture of dried snot and a bloody scab. It only effects my right nostril and travels deep into my sinus, below my right eye. There's a lot of pressure in this area and I can't breath. Although it sounds disgusting, I have to try and remove the blockage at night otherwise I can't sleep and neither can my wife as I'll end up snoring worse than usual.
I don't use sprays or ointments much because I find this makes the crust/snot/bloody scabs harder to remove as they go gooey.
For me I see this is a permanent effect of WG, rather than "I must be having a relapse/flare". But the last 10 months I have been getting nose bleeds. This has led (amongst other symptoms) to me having a nasal biopsy recently. I'm waiting for the results.
As your symptoms seem to be changing, it's always wise to have it checked out.

[mishb]

Nikki, mine is just the same.

Ask your doc for a prescription for an ointment called Kenacomb Otic ointment.
It's what they use after operations to help heal wounds.......it really does help.

My ENT said that the membranes in the nose are the thinnest of any skin on our body and most things will irritate them.
Fingers, tissues, hankies even cotton buds/tips will irritate the membranes. Try not to pick or even use your finger or a cotton bud to put the cream or vaseline on. You need to put a small blob or cream or vaseline near the opening of your nose and then massage it (from the outside) up into the sinuses.

This has really helped the scabbiness that is within my nasal passages, but doesn't really help the blockages in the sinus itself......still need rinses for that.

I guess the dog knocking into your nose can't of helped much either.

[drz]

I found removing the scabs or crusts seemed to only make things worse. I also got the line that it was due to winter dryness and not unusual. They never heard of Wegs I guess. One time I ended up in ER for several hours after a big scab came off. I thought I was going to bleed to death the way it gushed out. A well meaning but ignorant ENT had tried to fix my nose problem by cauterizing a scab area. Made for a most miserable 48 hours after they packed it with inflatable balloons and I couldn't lie down or sleep well or eat well with nose totally blocked.

I found using creams like KY Jelly helped reduce the bleeding from scabs coming off but lots of gentle rinses and no picking or hard blowing seemed to help it heal up eventually. It seemed to me that any extra force to try remove the junk causes damage and more scabs and bleeding when that comes off. I use a steroid nasal spray now when bleeding returns and this seems most effective and bleeding seems to stop in a few days. For me this happens usually along with a sinus infection when I also need an antibiotic.

[NikkiNicole]

This is SO painful. Sometimes, it itches and feels like something is walking inside my nose and I CAN'T itch it because of the pain or jostling anything loose. Ugh.

Thanks everyone. I am glad I am not the only one with such a problem in my nose.

[NikkiNicole]

Wait, that sounded bad! I'm not happy you all are suffering. I am just glad that I am not some weird anamoly!

[Dirty Don]

Wait, that sounded bad! I'm not happy you all are suffering. I am just glad that I am not some weird anamoly!

Well Nik, we ARE anomalies...and we're weird too! Once you/we learn to deal with that concept, there is improvement in how we feel and how we deal with WG.

[pberggren1]

Okay Nikki, here's the rundown:

First of all, this sounds like it could be active Wegs, a flare perhaps. One has to look at their markers and go for labs again when symptoms like this worsen. One has to go see their doc ASAP as well and hash out the symptoms, lab results, meds, etc.

Secondly, I strongly suggest a Waterpik with the nasal attachment for rinsing the nose. You have to make sure you have pure water like RO or distilled. Also, the salt has to be pure like coarse salt with no additives or sea salt. And of course baking soda is a must.

As far as nasal ointments and lubricants DO NOT USE VASELINE!!!! And dont' use Polysporin unless your doc or ENT says so. And one should not use Polysponrin for more than a week or so. I use a couple of lubricants at night now and then. One is called Secrais and comes in a tube and works great. Another is a spray gel from Neil-Med and also works great. Neil-Med has some great products out there.

I hope this helps hun. I hate to see you suffering like this. It seems like you have so many issues on your plate right now.

[NikkiNicole]

I just had labs done on Friday. ANCA still high but that doesn'tmean anything. CBC was beautiful, and even my CRP was barely elevated. But, within the last few days the nose has gotten worse, and now I have sharp shooting pains behind my eyes.
Waiting to hear from the doc ...

[pberggren1]

Those shooting pains sound scary hun.....Call your doc ASAP and say it is urgent!!!!! Don't wait for the e-mail.

[pberggren1]

This all sounds too familiar as well. This sounds like a sinus infection as well. I could be wrong but I think you need to see your main Wegs doc and ENT right away.

[mishb]

I can't help thinking that your dog has screwed something up when it accidently hit your nose.
I hope that I am correct, and it isn't a sign of something more sinister involving the wegs dog instead :unsure:

Phil, I have never been near remission but I haven't had a flare either, and my nose, until I used the cream, always bled like a tap.
You are correct about using the cream sparingly.

[Alysia]

When we are talking about the "activity" of WG, and between a state of a flare and that of being in remission, there can also be a state of "smoldering". I am trying to write here what I understand about it from my experience and from what my wg-doc told me.
But, since I might be wrong, please, everyone, correct me wherever I am wrong or add important issues that I forgot or don't know.
Being in a flare is dangerous and needs quick intervention. The sighs are CRP ESR above normal, fever, inflammations, aggravated symptoms, etc.
"smoldering" is when WG is active but "on low fire". CRP ESR CBC can be OK. C-anca not. This is my state for years. The problem is that "smoldering" is progressive and should also be stopped. My wg-doc is always looked worried when he consider my wg's-smoldering. The symptoms are less acute then in a flare but they can cause permanent damage like saddle nose. (my case) If my nose bleeds, my doc consider it as a state of smoldering/flare. (he is relating to the issue of bleeding very seriously). other "productions" from nose, are less serious according to him.
It is not simple to draw the line distinguishing between flare/ smoldering/ remission/ permanent damage of wg.
My doc also said that you have to check the "movement" of symptoms: better, worse, the same. He is calm when things if going better but not in other states.

[drz]

My Weg expert at Mayo said he considers a flare for me something life threatening that requires a major intervention right away like active bleeding in lungs or kidneys and most likely along with a high ANCA rate for me.

He considers what i regard as mini flares a fluctuation or exacerbation of the often normal residual symptoms that may be present even when one is considered in a drug induced remission. For me this usually goes along with an infection with symptoms of increased nasal and sinus bleeding, increase in CRP and SED rates to above normal, joint pain, and significant increase in fatigue. These are all symptoms one can have and still be regarded as being a drug induced remission.

He defines remission as meaning the symptoms are adequate controlled by the Weg drugs so no major change in treatment plan is needed and that these symptoms will most likely get better again with minimal or even no increase in Weg meds and/or an antibiotic to treat the infection which is making the Wegs residual symptoms worse. Or at least the symptoms are not likely to get much worse or severe enough to require a more drastic treatment even if they persist.

I feel i have had several small flares and one required a several day hospital stay when I got a serious bladder infection, and needed big boost in Solumedrol, an IV antibiotic, and 50 mg increase in AZA but in their longitudinal study of long term treatment of Wegs I don't think they regarded this as a FLARE since I didn't need to take CTX or RTX or plasma exchanges again. But these micro flares or exacerbation in residual symptoms make for a lousy month or two when I feel sick, exhausted, bothered by heavy bleeding and crusting in nose, and having joint pain again. Even though I may not die from such"flares" unless the infection gets away and out of control i feel my Wegs is definitely acting up at these times so i regard them as small flare. But i do understand the practicality of the definition they use for their study too.

[gilders]

Flares, mini-flares, relapses, smoldering, active, inactive, remission....it's hard to define different stages in health.
When I was first diagnosed with WG I was so close to death and saying "I felt as ill as humanly possible" doesn't do it justice.
Since then I have had, what me and my Dr would call, 3 relapses and 1 episode where although WG was put in remission, the scarring on my kidneys continued and continued to destroy them.
Without undermining anyone else's struggles with WG, that first time it "attacked me" was as severe it could get with anyone, except for those that have lost their life. But since then what I call relapses have never led to anything as severe, or life threatening. I have responded well to treatment with each relapse in regard to getting back in to what I'd call remission.
That doesn't mean to say I've return back to normal health each time - not in the slightest.
WG has caused permanent damage and no matter how deep into remission it may be, it has left me medically disabled.
When I hear people who say their WG has been active for more than a year I can't understand how they can be alive, but then I remember just how different this illness is from patient to patient. This is the best place I have found for people to try and understand their illness and help others, but it's sometimes hard to give the correct advice. I have had a positive anca result for 11 months, my rheumatism is the worst it's ever been, my fatigue is worse than ever (except for when I've been in hospital), more nose bleeds often and generally I feel much worse than usual. Most people on this forum would probably think "why aren't you getting treatment - it sounds like a flare", but I can't be sure for 2 reasons. Firstly my kidneys are usually the first thing to be attacked and they are stable at the moment. Secondly, when I have a flare/relapse if I haven't started treatment immediately, things deteriorate VERY quickly (not over a 11 month period). I certainly haven't ruled a relapse and will not be surprised if my recent biopsy comes back with bad news.
If the treatment wasn't so toxic, then the sensible thing would be to treat it even at the slightest sign of activity. My kidneys probably wouldn't cope with the treatment, so I will only get treatment after a biopsy that proves activity.

[Alysia]

I have had a positive anca result for 11 months, my rheumatism is the worst it's ever been, my fatigue is worse than ever (except for when I've been in hospital), more nose bleeds often and generally I feel much worse than usual. Most people on this forum would probably think "why aren't you getting treatment - it sounds like a flare", but I can't be sure for 2 reasons. Firstly my kidneys are usually the first thing to be attacked and they are stable at the moment. Secondly, when I have a flare/relapse if I haven't started treatment immediately, things deteriorate VERY quickly (not over a 11 month period). I certainly haven't ruled a relapse and will not be surprised if my recent biopsy comes back with bad news.
If the treatment wasn't so toxic, then the sensible thing would be to treat it even at the slightest sign of activity. My kidneys probably wouldn't cope with the treatment, so I will only get treatment after a biopsy that proves activity.

Hi, considering what you are going through, maybe it is not so important to call it a flare or other name, BUT it is important that you get a treatment.
maybe it is time for RTX ?

[Donna-from-Philly]

I have the same problem and various sinus issues that has led to three sinus surgeries in three years. However, I have gotten relief from doing a nasal rinse with saline and dissolved bactrim in the solution. It's something my ENT prescribed and kind of keeps everything cleared out and free of infection. I am an anomaly too!!:thumbup:

[gilders]

maybe it is time for RTX ?

It's the "maybe" that is keeping me awake at night:sad: (but at least I've got you guys to talk to):thumbsup:.
The reason that we're (me & my Dr) holding off treatment is due to my kidneys.
The toxicity of the treatment could finish my kidneys off for good. A flare will also finish my kidneys off for good.
Therefore the only chance of my kidneys surviving a little longer is to keep off the treatment and see if my "mini-flare"/"smouldering" settles back down without treatment. I don't know how realistic this is, but I really don't want to back on dialysis permanently. Most people on dialysis die from heart complications than kidney complications. I already have heart failure, so I think you'll understand why I am so scared of being on dialysis for life.

The one thing that keeps my spirits up is traveling and spending a lot of my free time planning vacations. Depending on with form of dialysis I receive, this will restrict my travelling to a chore or at worse impossible.

[Alysia]

It's the "maybe" that is keeping me awake at night:sad: (but at least I've got you guys to talk to):thumbsup:.
The reason that we're (me & my Dr) holding off treatment is due to my kidneys.
The toxicity of the treatment could finish my kidneys off for good. A flare will also finish my kidneys off for good.


Is RTX dangerous to the kidnyes ?

[gilders]

Is RTX dangerous to the kidnyes ?
Any drug has to eventually be processed by kidneys. If you're kidneys are healthy, then pretty much any drug will have no adverse effects on your kidneys. RTX kills cells. Kidneys struggle to get rid of dead cells. Again not an issue if you have healthy kidneys. My treatment has always been a balancing act.

Another problem for me, but not most WG patients, RTX - "Rituximab may worsen heart problems for people who already have them"

[Alysia]

Any drug has to eventually be processed by kidneys. If you're kidneys are healthy, then pretty much any drug will have no adverse effects on your kidneys. RTX kills cells. Kidneys struggle to get rid of dead cells. Again not an issue if you have healthy kidneys. My treatment has always been a balancing act.

Another problem for me, but not most WG patients, RTX - "Rituximab may worsen heart problems for people who already have them"

Dear Gilders,
thank you for your answer.
but I think there are people here with problems of WG in their kidneys who did get rtx.
it is a question to inquire into....
you are facing a complicated situation... I hope you can overcome that "flare" soon and feel better, this way or another.
I am sending you my prayings :hug2:

[gilders]

Thanks Alysia.
Yes. This is where the "balancing act" comes into play. If there is a definite diagnosis of relapse/activity, then there will be no hesitation in getting my treatment (RTX or whatever my Dr decides on). But while I'm having this smouldering or mini flare, it's knowing if it's worth having the treatment or not. My ANCA has been going up each time since last October, but my last test (a few weeks ago) it had gone down a little. Hopefully things are settling back down, although I really struggled earlier today going into 2 shops.

[drz]

It seems that all our treatment for Wegs is a balancing act, weighing the risks of one treatment against the risks of not treating and trying to weigh the benefits of each alternative. Some times it seems easy and choices rather clear and some times it seems like there is no really good or appealing choice. Our best hope is to have a doctor with lot of experience in treating our condition to help us make these choices and a supportive family to help us in this decision making.

[MikeG-2012]

Hello everyone,

For those of you experiencing nasal crusting, I have a question. Mine appears to be getting worse. In fact, sometimes, I can't even touch the right side nostril opening because it's so stiff and tender. I rinse, and things get moist but I wake up in the night feeling like I have sand dunes in my nose.

Now ... things are more painful. I couldn't breathe clearly through my nose and took a quick tissue to remove some of the crusting and ... surprise ... blood came a-gushing out my nose. It stopped after abnout 10 minutes or so and I continued on my day.

Fast forward to a little bit ago at work, I had to do the same thing and it happened again. Unfortunately, it dripped rather quickly all down the front of my sweatshirt before my co-worker could toss me the tissue box. We are only allowed to be out of the room one at a time so I shoved a tissue up my nose and continued to work.

Anyone else have crusting like this? This is how it was at the beginning of my long illness that became Weg's. This is how it was back at the beginning of this year when the nasal issues became worse. When I've gone in to see my ENT he just says it's "dry". Well ... it seems no amount of rinsing, saline moisturizing spray, saline cream, or vaseline is helping. And it's not dry ... there are scabs and hard stabbing crusty things in my nose making it difficult to do anything. Dry to me would be just dry ... I don't know.

I just dread going to the ENT again!

Red eyes are diagnosed as "dry eyes" when I have them. Bloody crusty nose diagnosed as "dry" when I go there! Grrr. I'm not a happy girl right now.


You're not alone in the crusting battle. The ONLY thing that has been keeping my nose open this past 18 months after diagnosis is AGRESSIVE, GENTLE rinsing. I started with squeeze bottles, and then graduated to a SinuPulse Elite waterpic type machine. Burned up the SinuPulse, and found that the $49.00 Waterpic from CVS fits the tips from the SinuPulse machine. Here's by what I consider AGRESSIVE, GENTLE rinsing: I run 2-3 liters of distilled saline through 2 times a day with the waterpic. Gently at the start, and slowly increasing the flow after a few minutes. I gently blow out the crusts, and other debris and then keep rinsing. Yes, it's a LOT of rinsing, but with the waterpic, it holds more at once than the squeeze bottles, and puts out less volume than the squeeze bottles too. the nice thing about eh constant flow is that you never have to stop the machine--the basin holds 1 liter at a time. I've also never flooded my ears with the machines, but I did many times with the bottles. I also keep a supply of Alkalol on hand to mix in at least one basin full a day to get a little extra relief and soothing. When things were good, we even tried 1% JJ Baby Shampoo solution. That worked nice when the sinuses were in better shape. All of this has been discussed and worked with my ENT. My ENT still shakes his head when I tell him how much saline I run daily. He has never had someone be as aggressive and diligent as me in trying to help myself.

I've recently had a BAD flare-up and my ENT and Rheumatologist determined that the weg must be back and active in my sinuses because of the aggrivation, damage, infection and migraine headaches. It's bee 8 LONG WEEKS of chronic, debilitating headaches until they finally decided to bump up the pred again to see if it will give me some relief. So far (day 4), things are improving. If this does not do it, adn the sinus flares up again, I hmay have to change treatments from Mychophenolate to another course of treatment.

Nose bleeds that are bad can be temporarily stopped a couple ways. I keep a bottle of Neo Synephrine (sp?) drops and cotton balls in my backpack (yea--MAN-PURSE!!) all the time. Saturating the cotton ball with the drops and stuffing it in the nose is a lot less messy than the tissues. I also keep a spray bottle of the same for times when the bleeding is not just in the nose proper. Usually, one sniff and the bleeding will slow enough that you can manage it externally. BUT AGAIN, talk to YOUR DOCTOR(S) before doing any of the stuff I do.

As far as your doc telling you it's dry, FIND A NEW ONE!!! My ENT has been GREAT. Every visit (almost monthly the past 5-6 months), I get a good cleaning in the chair at the office, which consists of 10-20 minutes of suction, cleaning and crust removal. My insurance pays for it, and I am SO GLAD for that! This week, my ENT actually was able to numb me up enough to clean out my Ethmoid sinuses--yes, in the office! If your ENT is only casually looking in and not using a scope, or offering to help you with some relief, I'd say it is definitely time for a new one--NOW! I don't DREAD my ENT at all--I LOVE TO GO SEE HIM, because I get more and more relief each and every time. When I really am hurting, I can see in the frustration and shared pain in his eyes, because he wants to help me, and I really, truly feel that he cares.

Ultimately, YOU HAVE TO BE IN CHARGE, and TAKE CHARGE of your care! But, you also need to have an open and good relationship with an ENT that cares enough, and knows enough about Wegener's to help and work with and for YOU! My doc is in Vancouver this week at the national ENT convention (2013 Annual Meeting & OTO EXPO (http://www.entannualmeeting.org/13/)), continuing his education. He plans on “…talking to my colleagues about your case, if that’s Ok with you?”

So, hang in there!
MikeG

[Titus3:2]

My concern for all of you suffering from this kind of nasal discharge is that you do not develop a saddle nose if you do not already have one.I would be very concerned if it were me.

[Alysia]

My concern for all of you suffering from this kind of nasal discharge is that you do not develop a saddle nose if you do not already have one.I would be very concerned if it were me.

Hi Titus,
cong for your avatar. (btw- where did you take the name Titus from? I "know" one from my history lessons...)
it is very true: I suffered from nasal crusting and bleeding for years and "got" that saddle nose :sad:

[pberggren1]

Very well said Mike!

[Titus3:2]

Alysia,I am very sorry you have a saddle nose.I have one also,and hate the words saddle nose.Titus 3:2 is a verse from the New Testament .Thank you ,for asking.

[Alysia]

Alysia,I am very sorry you have a saddle nose.I have one also,and hate the words saddle nose.Titus 3:2 is a verse from the New Testament .Thank you ,for asking.

Hi Titus, I also hate that name "saddle nose", sound non-human... maybe we can give it another name, like "weggie's nose"....

[Titus3:2]

Hi Alysia," weggie's nose" works for me. I know some people get the " weggie's nose " from snorting certain drugs.

[Dirty Don]

I know some people get the " weggie's nose " from snorting certain drugs.

Interesting crowd you know! LOL! There is nothing alike in a coke's addict's nose and a Weggie...believe me 'cept perhaps the desire to feel better...

[freakyschizogirl]

Whoop Whoop to the weggie noses out there. I remember when mine collapsed and I was chatting to a work colleague about it. I literally saw my nose go over the next few month and although it was horrific when they told me I had a hole in my septum and my nose had collapsed it was ultimately the thing that got me diagnosed, so I owe my nose for that. I also got the 'do you do coke' talk. I was also asked if I had syphilis. Alysia if ya ever need to chat to someone one to one about crusting, bloody, saddle nose stuff, please do pm me.

[gilders]

although it was horrific when they told me I had a hole in my septum and my nose had collapsed it was ultimately the thing that got me diagnosed, so I owe my nose for that.

I'm glad you try and look on the positive side things!:thumbup:
It was my kidneys failing that put me under the care of my Dr (after 10 other ones had given up on). If my kidney's had not have failed, then I hate to think if I'd still be alive today, after all the last Dr I was under before my kidney one told my mum that I wouldn't leave the hospital alive.

[freakyschizogirl]

I try my best to be positive, I don't have a lot to complain about these days but I do like to share my knowledge and wisdom. They'd done blood tests and biopsies but the hole and collapse was the red flag. I really need to post the photos from my nose surgery...