Nasal Crusts (Picture)

[Jackie]

A Big Hello

I hope you can help. Does anyone out there suffer from nasal crust that lodge under the uvula. See photo in my album.

I am currently under going tests for WG. So far bloods are good and nerve conduction test normal. I now have to undergo a biopsy of the nose. I have fleeting pains throughout my body including ears nose and neck. Pains are going on just over a year and post nasal drip for 6 years with regular hoarseness.

Anyone out there suffer from limited WG?

Appreciate your help.

Jackie

[elephant]

Jackie that is what they first diagnosed me with..until they ( rhuemy) realized that I had it since I was 12 with kidney failure then kidney transplant.....limited to me makes me want to scream! WG is really unlimited....it can attack any part of your body...any part....My Wegeners attacked my kidney, lungs, ears, eyes, sinuses, blood vessels ( blood clot and swelling of legs) and probably other parts of the body.
I had biopsy of my maxillary ( sinuses ) four of them....and the pathologist must of listed possible this, possible that ...and they were all scarey..you might not get an answer from the biopsy. From the beginning they went by my symptoms. Then last year when I had a wedge cut out of my lung and that confirmed Wg.
Hopefully they can figure it out soon for you.

[Sangye]

Jackie, even if your docs call it "limited Wegs" you have to remember that there is nothing limiting it to a particular area. It might never involve other areas, or it might affect multiple organs-- or anything in-between. It isn't like cancer, where they can determine if a tumor has metastasized. Wegs is like a wildfire-- one minute limited to a particular area, the next destroying one thing after another.

We recently lost a member who had been dx'ed 3 months prior with supposedly sinus-only involvement-- very limited! His heart was being silently destroyed by Wegs and he died of a heart attack.

I have "limited Wegs." Though I have numerous symptoms, my main involvement is lungs (tendency to hemorrhage). I've almost died several times from it and from lots of complications to Wegs. If you are dx'ed with Wegs, don't let anyone treat it with less urgency because they've labeled it "limited."

[Jack]

Hi Jackie,
I think you are going to get a similar reply from most on this forum. I started with sinus trouble and nose bleeds/crusting and progressed to kidney failure and a transplant due to the ignorance of the ENT doctor who treated me. You must get a confirmed diagnosis and seek out a Wegener's specialist. You will get lots of help to do that from members of this site if you need it. The heart and kidney problems mentioned here show very few symptoms so will not be detected by doctors who are unfamiliar with the disease.
Hope you get a some confirmation from the biopsy results, unfortunatly Wegener's is very difficult to diagnose due to its diverse nature. Every patient presents with different symptoms and blood test results.

[Jackie]

Hi Elephant

Sorry you had to go through so much before your diagnosis. How are you doing now?

My doc mentioned limited Wg because my bloods are all great. Now we have to look for it in the nose. I have been told there must be inflammation before a biopsy can be taken yet I have nasal problems for 6 years.

Hope your doing well.

Jackie

[elephant]

I am in remission with medicines, unable to get off the medicines because of the damage caused by the WG and I have a high chance of flaring. My sinuses are still bothering me...still stuffy at times, blowing my nose and sinus infection, have a little lung damage but doing great. My lung function improved from last year so I am off both inhalers ( albuterol and symbicort). I still take a bunch of meds, but I am happy to be alive. I have a 4 and 9 year old to take care of, that gives me reason to be on top of my medical crap!
I too had crusting in the beginning and nose bleeds , but not alot of bleeding. Mainly just severe stuffiness and runny nose. My ears and eye hurt. I became almost completely deaf in both ears. I was complaining for five years about the eye before the sinus and ears went crazy! But I had symptoms the whole time but it was mild but there...so the doctors thought I was a hypochondriac. My family thought so too.
I had many weird symptoms that effected my whole body.
I hope they figure this out soon. Did they have you pee in a cup to check your urine?

[Jackie]

Hi Sangye

Sorry to hear you lost a member may he R.I.P

There appears to be multiple conflicting opinions with regards to Wg. Hopefully someday soon they find the answer. I have noted from this site that most people have been through the mill before the correct diagnosis has been made.

Do you have your Wg under control now?

Jackie

[Jackie]

Hi Elephant

Pleased to hear your in remission. Great to hear you have kids, best tonic of all. I have one niece and she takes my mind of things. I know its not easy when you are fighting chronic health problems to keep your spirits up but children are the best pick me up.

I too have many weird symptoms going on around my body. Aches and pains the move around my body never staying in the one place for too long, viibrations, ear and neck pains, post nasal drip, nasal crusitng and crusting which lodge under my uvula. The list does go on. My rheumatologist tells me the next step is to have a biopsy of my nose under my ENT specialist. Don't understand why one was not taken before now.

Yes I had my urine checked together with multiple bloods and there are all great. To be honest it does not add up. No confirmation of what the problem is.


I live in Ireland and so far cannot find a WG specialist.

How did you get diagnosed in the end after your long battle?

Jackie

[Jackie]

Hello Jack

How are you feeling these days?

I note your in Birmingham, England. I'm just over the water in Ireland. Do you know of any Wg specialist in Derby, Birmingham or Nottingham.

Not sure yet what my problem is but I am suspicious of Wg

Jackie

[Sangye]

Jackie, just last week my Wegs specialist said the Wegs is under control for the first time in 4 years. (Not counting the year I had it before dx) It's been like wrestling a bear to get it to this point. Most people have an easier time getting it under control, especially using the 2 heavy-duty drugs I've used (ctx and rtx).

The Wegs specialists agree about Wegs, it's the non-Wegs specialists whose opinions conflict with them. Be careful about who you listen to. Many of us are alive in spite of the non-Wegs specialists and their opinions.

[DEE]

jackie my wg specialist worked at ST JAMES IN DUBLIN goggle (weghers st james dublin ) were they did research on wegners through the immuinology department dont know if this is any help i know he still goes over to ireland several times a year
im seeing him on the 14th july will ask him about wg consult in ireland for you DEEx

[Jackie]

Thanks Sangye, I keep that in mind. Hopefully the future is bright for you now.

Jackie

[Jackie]

Hi Dee

That would be GREAT, thanks a million.

Hope consultation goes well.

Jackie

[JanW]

Jackie, I have limited WG as well (minimal sinus, major windpipe, involvement) and the important thing to remember is that while the diagnosis is 'limited' damage may occur at any time to any part of your body, so your doc needs to treat your symptoms seriously as well as do regular testing of things like eyes and ears to establish baselines on hearing, eye inflammation or eye disease (if present), sinus/nose, urine to see potential kidney problems, echo/EKG for heart problems.

I hope you get your diagnosis quickly.

[Jackie]

Hi JanW


Thanks, just wondering how did you get you diagnosis and did it take you long. Did you have nasal biopsies and if so did you have to have inflammation before they could be taken?

Thanks

Jackie

[Jack]

Birmingham QE Hospital is a major center for vasculitis research, see my post here - http://www.wegeners-granulomatosis.com/forum/hospitals-clinics-doctors-nurses/883-names-locations-specialists.html for some names.

Have you tried nasal irrigation for the crusting problem? It helps a lot. Do a forum search for titles with "irrigation" or just ask and I'll post something here.

[Jackie]

Jack, I have tried nasal irrigation for the crusting problem but avoid doing this too much as the water annoys my ears and swells the eardrums. Instead I use a squirt of sea water spray and don't have to use as much water. The problem I have is that the nasal crusts lodge under my uvula, wondering does anyone else have this problem? I end up having to use swabs to remvove them.

Jackie

[Sangye]

When you do the nasal irrigation, are you using a neti pot? If so, you have to make sure the water temp, type of salt and salinity are correct.

[Jackie]

Thanks Sangye, I use the bottle neilmed sinus rinse. Water temp etc are all correct.

Cheers

Jackie

[coffeelover]

Jackie,

I have been diagonosed with "limited wegeners" but suffered from tracheal stenosis that almost killed me and continue with the crusty nose, occasional bleeding and stuffy sinus issues previously described by others. I have things fairly under control with meds right now, but would never consider this disease limited or small at all in nature. I made that mistake once and now work with the disease instead of against it on a daily basis. I hope you get the help you need to live as normally as possible. this forum is great for information gathering and we have a wealth of knowledge here with experiences and "been there" situations. Glad you reaching out \!
coffeelover

[Jackie]

Hello Coffeelover

Many thanks for the information.

Jackie

[elephant]

Jackie, when your ears are getting full from the sinus rinse, that is "sometimes" in indication the wegeners is active or damage to the estauction (sp) tubes. I use to stop it too because of the fluid build up in the ear tubes. Then about 6 months ago I had to increase the prednisone back to 10 mg and the ear tubes were alot better. Now I am on 7 mg and hoping that is not going to happen again!

[Jackie]

Thanks Elephant I'll keep that in mind. Hope your meds will do the trick for you.

Jackie

[Sangye]

Then about 6 months ago I had to increase the prednisone back to 10 mg and the ear tubes were alot better. Now I am on 7 mg and hoping that is not going to happen again!
Elephant, I remember when you couldn't get below 10mg, and now here you are in REMISSION! I keep celebrating it every time I think of you. :)

[jola57]

Hey everyone, Elephant what a triumph, 7mg, that is great. Easy does it now. I have been sitting on 5mg for a few weeks now and will not go down until I am back at home. You don't need a flare now, just slooooowly come down by 1/2mg. Yeay I am so glad for you

[Carol]

I too had crusting of the uvula - I never knew what it was called until tonight. After some time I worked out how to dislodge it. I know this sounds disgusting but it is very uncomfortable when you have this blob of goo sitting high up in your throat. So when i was doing a nasal wash I stopped during it it and pulled air and the salt water down from my nose down the back of my throat and spat it out - what a relief it was. You buy a nasal rinse kit from the pharmacy - about $15 which includes some sachets. You can make the mixture from a mixture of salt and bicarb but it isn't as gentle as the sachets. hope this is helpful. I couldn't believe that I had been to the nose specialist and he was impressed with how bad my nose and sinuses were and was going to operate. surely he would have realised that something more complicated was going on. Regards Carol

[Jackie]

Hello Carol

Thanks for the information. Hopefully I shall receive the answer soon.

Jackie

[elephant]

Yea, I am happy that I am in remission. But I will be honest....I am checking my eye balls, skin, ......ect. I am maintaining a positive attitude! Sometimes I scream out loud," Wegeners get out of my body now! You have no place here!" Then I use my hands in a sweeping motion and throw that WG out in the garbage!

[Sangye]

LOL-- Just don't do that out in public! :D

All kidding aside, it sounds like it could be helpful.

[Deanne Hull]

Hi My condition was diagnosed straight away with a nose biopsy, I had a ct scan and then the biopsy and they were on to it with one day of being in hospital after 3 weeks of nasal pain, weight loss and feeling very ill...so i am very lucky...hope it goes well with you..

[Jackie]

Hello Deanne

Many thanks for the information. How are you feeling now?


Jackie