View Full Version : Nose Questions

01-02-2010, 08:28 AM
I don't officially have nose involvement, but I have some symptoms/signs and wanted to ask you Nose Weggies if you have them, too. This is mostly just for curiousity, since I'm under the care of a Wegs ENT in addition to a Wegs rheumy.

My current flare was going on for a few months before we knew that it was a flare. During that time I noticed changes in my nose.
1) Part of it (the cartilaginous part) becomes bright red easily. Kind of a blotchy red but very noticeable.
2) My nose cartilage got a lot looser. If I rub my nose the cartilage moves much further than normal and generally feels softer than before.
3) My nose seems to be narrowing in general-- the bony area, not the nostrils.

Now that it's winter, I've noticed that when I breathe in really cold air my nose hurts on the inside-- about where the bone begins. It's quite painful and persists a couple minutes after I warm up again. Feels like the pain you get when you eat ice cream too fast.

I don't have crusting, bleeding, etc...

Does any of this sound familiar to you Nose Weggies?

01-02-2010, 08:31 AM
None of the cartilage problems.
None of the redness problems (too much drink over Christmas? ;) )
Pain breathing cold air - yes.

01-02-2010, 08:40 AM
LOL-- good try with the drink joke! While the lay people enjoyed a bit of champagne last night at our temple, the monks and nuns filled up on sparkling apple cider!

01-02-2010, 08:47 AM
I have heard of WG patients complaining about nose changes and it has to do with our disease. I have sinus issues but no cartilage problems. Yes, I do have pain breathing cold air. My nose does get red sometimes too. Actually my right side of the nose is painful even without cold weather.
Sangye, take a close up picture of yourself or nose and document the changes.
Hope it's not WG attacking your cartilage. I have seen many pictures of the saddlenose.

01-02-2010, 11:02 AM
Sangye, try and post the pics on your profile of your nose.

Thank Goodness that you don't have crusting or bleeding. Are your sinuses dry? Do you have a post nasal drip?

What I have noticed with my own nose and sinuses is that whenever I flare it changes that shape of my sinuses. I can tell this because I irrigate with a waterpik every day. It's hard to explain. My nostrils usually close up as well just like my right one was right now. I think the pred is kicking in because my right nostril is getting bigger again and the moon face and pressure and headaches in the head are coming back.

When you mention the cartilage being looser what do you mean? Do you mean the septum in between the nostrils? And the outside of your nose becomes red if you rub it?

01-02-2010, 02:22 PM
My nose profile looks okay. I only notice the changes from the front view because it's my own nose. The narrowing would look normal to anyone else.

I don't have sinus involvement (thank goodness) and no nasal crusting, etc... I'm so sorry you do. It must be awful.

By nose cartilage I mean the part of your nose you can move around. Everything below the bone. Not the septum. My Wegs rheumy said Wegs can affect the cartilage, so hopefully it won't progress to a saddle nose.

The redness isn't after rubbing it. It just happens at any time. It's a big irregular red patch on the lower part of the nose. It's worse after a hot shower or coming in from the cold, but it can turn bright red any time. (BTW, my whole face gets bright red patches after a hot shower. Anyone else get that?)

01-02-2010, 03:12 PM
I sometimes get blotches or rashes on my body after a shower or bath. I have been quite itchy on my face and neck only when lying down at night trying to get to sleep.

01-02-2010, 03:53 PM
A.J.'s nose use to look like someone had used sandpaper on the inside. He had horrible crusting and blew things out of his nose that were hard as rocks and huge. They came from deep in his nose and he would have to blow and blow. IT appears that they may be coming back. He is down to 20 mg of Predisone and I have noticed the frequent nose blowing again.

01-02-2010, 04:58 PM
Sangye, I understand what u mean about cartildge feeling looser (I can pretty much squash the cartlidge flat - obviously not recommended to play with ur nose as this can only cause more damage), my nose and also seemed to be getting thinner (but not at the nostrils), but no reddening and I do suffer from pain in the pain every now and again (especially in the cold) but I have always had sinus involvement (I had nose bleeds for about 12 months prior to having organ involvement).

Sadly, today I have saddle nose and to look at it side on it has a big dip where the cartlidge has been destroyed, front on the skin pulls down on the cheek (obviously due to the nose not sitting right). I had noticed the changes over the years, my mother lovingly calls it a boxers nose (hhmm doesn't do much for a girls ego) and I fondly look at pictures where I might have been snapped side on and realise my nose was pretty normal (especially to what I have now).

01-02-2010, 05:42 PM
I now get what you mean Sangye when you say the cartilage is loose on the nose. I have saddle nose too and is loose also.

01-03-2010, 01:08 AM
I think the color changes has to do with Raynaud's disease. Two of my sibling have this disease and of course I do. Raynaud's disease usually coexists with other autoimmune diseases. It can affect the nose especially change in weather and stress.

01-03-2010, 01:45 AM
I can relate to this one. I to have the nose pain redness swelling comes and goes. The cartlidge is severed in my nose that has been confirmed by mri and catscan. or a deviated ceptom?? I dont know how long I have had it though. I had a nose job when I was 15 and the nose was never the same and the cartlige very thin and easy to snap after that. The kids use to bump me with there heads like babies do and snap , crunch broken. So......Idont know if this was new or old. I find myself breathing through my mouth more and more. My nose hurts so bad I end up searching for the pain meds. It almost feels as if it is hanging off my face. The other thing I have noticed besides the norm pred swellimg is that the bridge of my nose is getting wider. It was the magor fix at 15. Really big bridge. No bleeding to speech of. I do whistle when I breath now too. Post nasal drip always, that has always been there. The ice cream feeling I know also. That hurts and radiates to my teeth sometimes. I have noticed that dry area is not as nice to more humid air in any place. The shower is wonderful the dry air makes it worse diffinatly. It is winter here too. Massive dry air. I had had 4 scans and or mris since July of my sinus and face and except the broken cart they seem to think I am fine. Then why does it hurt? And has gotten harder to breath through the nose?????? Thatswhat I keep asking. Hope you are feeling better.

01-03-2010, 02:29 AM
Onatreetop, you might be on the beginings of a flare.

01-03-2010, 03:04 AM
Onatreetop, I can't wait for you to see the JHU Wegs ENT-- Dr Young Kim. He'll be able to help you understand a lot of that. Make sure you tell the JH rheumy and ENT about the whistling sounds when you're breathing. That could be tracheal stenosis or asthma.

01-03-2010, 03:57 AM
Onatreetop, Your ethmoid sinus is probably swollen so its hard to breath. I agree with the above naggers :), and I can't wait till you see the specialist. I use nasal gel for my nose, because it get's dry.

01-05-2010, 12:25 AM
I cant wait to get there either. I feel a cold coming on or something simular. I have some of the ocean gel and it works well when I need it. Last night I tried to prop myself up to breath easier and was woke up by the kids because my snoring was so loud repetedly. I have to call for that sleep study appointment still. I see the pulm. doc Friday too. The RA wednesday. I do take singular already, allergies. Flare maybe. I am still at 30mgs pred and 100mgs cytoxin. Find myself realying on caffine more to keep me up and going. Without it all I want to do is sleep. There was sometime before christmas that I was so tried I would start falling asleep while driving and would pullover for a nap. i put a blanket in the car and everything. At least I did it.Instead of trying to make it where I was going. Anyway the nose is there hanging off my face. Congested on one side.

01-05-2010, 12:35 AM
I'm not sure if caffien is such a good idea for Weggies. I have totally cut it out of my diet. The last time I had a coffee or pop was about 3 years ago - don't miss it at all.

What exactly is ocean gel?

01-05-2010, 12:44 AM
it is a gel lubericant made from ocean water I believe. My doc friend has samples in his office. It is for the cracked nose or really dry skin around your nose and or face. Like when you get a cold and blow your nose alot and it cracks up. Mine will actually split by the nostrels so he gave me this Ocean Gel and it goes on wet but dries into the skin quickly and the relief Ahhhhhhhhhhhhhh!!! I highly recommend it.

01-05-2010, 01:27 AM
I use a saline gel spray, and insert it into my nose to relieve dryness. Actually I think I have a cold, I want to start a thread about how long does a cold last in WG and is it a cold or flare?

01-05-2010, 02:05 AM
thanks Onatreetop and elephant.

01-05-2010, 02:44 AM
I would bet anything that you're in a loop with the caffeine. I saw this all the time with my patients and have actually done it myself a few times:
1) You have your normal amount of caffeine. The caffeine works by stimulating your adrenals to make more adrenaline.
2) Some crisis arises so you drink more. Adrenals are asked to make more adrenal than usual.
3) If that over-exertion becomes chronic, then you respond to it by increasing your daily caffeine intake. Adrenals are working MUCH harder to keep up with this new demand.
4) Depending on the strength of the adrenals, they can only sustain this for a short time. Now when you ask for more adrenaline, they are so wiped out, they can only give you a little. (They literally shrink) So you don't feel as energized and you're probably even more tired than normal.
5) You drink MORE caffeine, wondering why the old amount isn't working. This is now like whipping a tired horse. The adrenals get weaker and weaker, less able to supply adrenaline. At this point, you're exhausted all the time, falling asleep during the day. You barely notice the kick from your morning caffeine.
6) This is when people start switching to espresso, Red Bull, etc...

Does this sound familiar?

Allergies are a sign of exhausted adrenals. So are frequent colds. Adrenal exhaustion is pervasive in the West. I rarely had a patient without some level of it. Basic Rule of Thumb: If you need caffeine to get started in the day, your adrenals are not in optimal shape. The more caffeine you need, the worse shape your adrenals are in.

No one likes the solution : You have to cut WAY back on the caffeine and tough it out for several days. Let your adrenals rest from the beating they've been taking. And then you can't go back up to that higher amount. The honest truth is that no one on pred (or with a history of it) should have caffeine in any amount. I can't tolerate any at this point. Even a cup of black tea makes me fall asleep within a few minutes of drinking it. The demand on my adrenals is just too much. I was never a daily caffeine drinker anyway, which has probably saved my life.

01-05-2010, 02:44 PM
COFFEELOVER does not want to take away ALL my vices. I gave up drinking, eating salt and fatty foods....not coffee though. But...that being said, my coffee intake is limited to mornings with my breakfast. No pop or other caffeine the rest of the day most days. I do not feel I need the coffee, but I sure do like it! There is that Decaf option as well. You know our temp before wind chill is way below zero right now and the warmth of a blanket, a fire and a cup of coffee is quite soothing.

01-05-2010, 03:43 PM
Does sound like the loop. That would be me. Well.............I went to the Er today with the painfully round face and 4 pds. gained while sleeping. Couldnt breath through the nose at all. so I called the prim first made the appt. at 245 than called the RA and they said go to the ER now. So I did and on the way I thought about it and the ER was deffinatly the better choice. Labs got done and chest xray taken. They called the RA and they agreed to treat me with a z pack of antibios and pain meds. i was in and out in less than 2 hours.i wasnt very comfortable about leaving and expressed that and the ER doc said I can see that you arent feeling well but...........................this is what we can do for you. That and afrin but only for 3 days. i have never used it before. My blood pressure was up at 158/111. But I was sleepy and weak. Anyway, that was the day I guess I get to hunt for the ENT doc next. After I left the hospital on my way home I got a bloody nose for the first time in a longgggggggggggggggggggggg time. painful but not massive. The discharge papers read sinusious.

01-05-2010, 07:07 PM
Hope it is sinusitis onatreetop, but if the antibiotics don't work after a few days, you have to start suspecting a flare.

I have suffered from water retention in the past and while it was associated with a flare on one occasion, on another it was sorted out by a few days taking Furosimide.

01-05-2010, 10:58 PM
Thanks Jack. I am hoping it is the lesser of the two evils too. It would stink to flare on 30 mgs of pred and 100mgs of cytoxin. I see the RA on Wednesday and see what he says or doesnt. The afrin seemed to help temp. but nasty stuff it is. I am going to use saline first this morning than the afrin and see if it last longer that way. The post drip is back.

01-05-2010, 11:56 PM
Onatreetop, I'm so sorry about you not feeling well. I am so glad you went to the ER, but mad that they didn't keep you for a day. They should have admitted you as a observation stay to evaluate you especially if you are on cytoxan and prednisone ( high) doses and 4 pound weight gain, severe hypertension and wegeners. I use to be a case manager and evaluatie charts according to Medicare guide lines and place people ( nursing homes, rehab...home care) and did a bunch of other stuff. Anyways you would of passed according to the guidelines even though your not on medicare. Hospitals folllow medicare guidelines. I know that you know your body well enought to head back to the ER if needed. Again, so sorry this happened! Hope this works!

01-06-2010, 04:22 AM
Elephant is right-- they should have kept you. I replied on the other thread about your visit, but will add this:

I think it could be Wegs-- 100 mg ctx is not a full dose and you were on 50 mg before that. It takes a month for that higher dose to kick in. Meanwhile, the Wegs would increase. 30 mg pred is also not a very high dose if you have active Wegs. I suspect that this is all Wegs, breaking through the subtherapeutic doses. I really hope I'm wrong.

01-15-2010, 03:42 AM
ontatreetop ~ Did you mention you have Wegener's and that you had concerns about a flare? I think ER doctors are, perhaps, more likely to treat the symptom when it comes to things not related to traumatic injury. Get you in, get you out. It's good you are seeing your usual doctor shortly. By then, if the problem was infection, you should have a good sense by how you respond to the drug. No response- be insistent about checking for a flare!

01-16-2010, 12:54 AM
Oh yes I did. Thanthey asked what I wanted to do for me? I said blood work to check kidneys and chest xray for lungs. They did and all came back good. They did the exam and etc. to also called the RA who picked up the phone and actually talked to them instead of dodging the call. So they spoke and agreed to z pack me and pain meds than sent me home with sinustus.

01-16-2010, 05:32 AM
I have many doctors who have confessed to me that they do not have a Wegs patient. They had to look it up on the Internet. So, I know I have to be the Captain at all times. I usually have to ask them to do this and that to check things out and they do. I never had a doctor say "no", I am not doing that. I had to convince them sometimes but they caved in.

01-17-2010, 12:10 AM
Hi Phil, wherever you are. Wrote 3 answers and puter spat them out I think. Just a big thank you for your informative answer. Sounds like a very clean way to get rid of unwanted materia.

01-17-2010, 04:54 AM
Hi Moyan:

I hope you got my private message about the Waterpik and irrigating sinuses and tear duct surgery. I'm not sure where that message ended up. Let me know how you make out.

01-17-2010, 04:59 AM
Thank you very much, this is the 4th thank you note :)

01-17-2010, 05:10 AM
I used to use a 50cc syringe with my own mixture of 8oz warm water, 1/4 teaspoon of salt, 1/4 teaspoon baking soda. It worked very well.

01-17-2010, 05:13 AM
Thank you Jack!

01-17-2010, 09:44 AM

I forgot to mention that the Waterpik works very well - probably the best way to irrigate the sinuses. It pulses the water at a rate of about 1200 pulses per minute. That is the rate at which healthy cilia in the sinus lining pulsate as well. Thus regularly using the Waterpik can somewhat help restore sinus membrane function. The flow rate can be controlled as well on the Waterpik. Another unit that is almost the same as the Waterpik is the Grossan Hydropulse unit. It has the same pump as the Waterpik but is more expensive.

01-17-2010, 12:25 PM
Thank you, Phil. I am in a limbo right now: For almost 2 years I have just done what they told me to, and only after finding this site did I realize I have been in some kind of remission, not realizing what WG is. Having 1 internist who is not very talkative hasn't quite helped either. I am now adding to my doc collection that took oiver when I skipped spoons: ENT, Rheumatologist, bacteriologist(? I think, foot is bad!) and when I am home one day I will eat icecream and bug the ones who weigh me!

01-18-2010, 05:16 PM
I lost all of my septum years ago from wg. I my nose also moved around like you are describing. I gat a red blotch everyday on the right cheek where my wg is the worst. Mine is all sinus and nose involvement and it did and still does hurt to breathe cold air. You should def get a head ct to make sure and to have something to compare if it is indeed wg. I hope it is not wg moving to a new place.

01-18-2010, 07:21 PM
yes my mom has nose involvement it is now lumpy and sideways a bit . We went to kansas city one year to learn about this disease and well that was about 15 years ago i believe . anyway there were many people walking around with no front of their nose she is lucky it didnt take her nose .
yes its very tender to her she has a hard time wearing her glasses .

04-18-2010, 12:46 PM
Sometimes when I blow my nose I get some blood, I just blew it and had some blood come out. Hate that when this happens...then here comes the "Freak out session!" Then I do a body scan...head to toe. Then here comes denial or is mabey not??? "My nose is bleeding because its dry?" Hey I like that excuse, it could be true. I'm tired... because I did work myself to the bone today. I am just going to leave it as " I had a nose bleed because it is dry!" There Feel so much better.

04-18-2010, 01:18 PM
That's happened to me, too. Usually it only happens when I'm overtired and other Wegs symptoms pop up with it. It happened yesterday and I got a little panicky because I'm tapering pred. But it didn't happen again today. You know how Wegs affects you Elephant, and if it passed your scan then I bet it's fine.

04-18-2010, 04:24 PM
ive just been reading through this thread and it has helped me understand a few more things about my nose problems
i thought the whistling caused by perforasion and i have problems when their is a temprature change when i was hanging out washing the other day it was cold wih a slight wind so when i came back inside were the heating had been on i get more pain in the most affected side of my nose and appear to more breathless for awhile DEEx

04-18-2010, 10:44 PM
I feel much better Sangye that is happens to you too meaning that we are not really having a flare just mishap?
Dee, did you ever have lung function test. Usually a Pulmonologist does the test in his office. I had two of them so far. I have improved a little bit. Yahoo!
I also get a my hearing checked at least once a year. No improvement, but not worse.
WG is a full time job. :)

04-19-2010, 12:45 AM
I've always felt like when I get overtired I outrun the drugs. It's just a gut feeling I have-- if the Wegs is smoldering under the drugs, then weakness allows the Wegs to punch through. Like "breakthrough" pain.

I'm so glad your pulmonary function has improved, Elephant. A little more air goes a long way!

04-19-2010, 01:12 AM
hi elephant
no not had hearing test gp thought ENTconsult would be able to arrange one through his department seeing him on thursday he said it would be quicker than a referral
no not had lung function test not sure what to make of breathless ness dont no if preds chest or because my nose and that im maybe mouth breathing but i seem to be pulling against throat area rather than feeling it in my chest if that makes sense if no better to monday will ring gp
hubbys holiday this week arranged around hospital appointments!!!!!!!!! DEE x

04-19-2010, 02:39 AM
The flow volume loop on a lung function test will be able to indicate any obstruction of the windpipe. VERY important I think if you're Weggie who is having trouble breathing and this hasn't been ruled out. For five years with me this was put down to allergies and asthma, and all the while my windpipe was becoming more and more scarred.

04-19-2010, 03:25 AM
As my Mother says this is a (colorful metafor ) inconvienience . It sure helps her and right now she has been through some rather hard intestinal involvement . please again i cant stress it enough .. if you have abdominal pain at all with this please .. go for a ct scan it will show alot ..
my mom tends to not sa a word and suffer through the pain . thats why it takes so long to gether treatment she doesnt say a word ..
sorry about the spelling guys !

Huggs to all and please remember
Do anything your heart desires !

04-19-2010, 04:18 AM
jan w thanks for your advice will take onboard DEEx