If you read these messages over your breakfast croissant, I should stop now, and I apologise for the revolting nature of the question.
On one of my stays in hospital, the chap in the opposite bed also had Wegener's, and a pretty torrid time he had too - his lungs filled with blood, he spent two weeks on a life-support machine - and this, doctors said, was because his WG affected his lower respiratory system.
I, on the other hand, have upper respiratory problems, and one of the ways it seems manifests itself is in the production of abnormal quantities of what I will politely call nasal mucus. Ever since I have had WG, I have had the problem, but have never heard of anyone else mentioning it - perhaps through embarrassment. Even though I have been ANCA negative for many years and, with the exception of a statin and a blood pressure tablet, have stopped medication, I still have this problem, which gets worse if I have any kind of infection. It can be quite embarrassing if I am out anywhere.
Does anybody else suffer this too?
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shanat19
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Don't worry about what you call "the revolting nature of the question". We are a hardy lot here. The chances are that if you have this problem then so do others. It sounds as if you are actually talking about loose mucus where you have to blow your nose pretty often to get rid of it. If that's the case then it sounds to me, from my limited knowledge, that your sinuses may be infected. Maybe the lack of maintenance drugs is causing this to manifest itself. My advice would be, as it often is, to speak to your ENT about it.. Meantime you could try something like a nasal saline solution spray (you can get it in a sterile aerosol can from Boots) which you used a couple of times a day. It helps keep your nasal cavities clean.
I have upper respiratory problems - mine are trachea and nose. However, I'm not troubled with mucus as I think you are describing. Mine is crusting, which the doctors tell you to leave alone - I bet they've never had crusting or they'd know how difficult that is, even though the upshot is that sometimes your nose bleeds. To keep the crusting to a minimum I use an ointment prescribed by my consultant - Bacroban (also known as mupirocin).
When I mentioned this problem to a consultant at my periodic examinations, he, in a letter to my GP, described it as 'crusting'. I have read the term before, but I don't feel that it is the same thing. Crusting sounds to me like something that affects the skin around the nostril.
hi i also get nasal problems which i have mentioned to the doctors,i dont get it all the time but want to know if its related to my wg.sorry to sound crude but its like large lumps of flem stuck in my throat and takes a lot of coughing to get rid and its thick lumpy and green,and until i can cough it up it makes my throat sore is this common to wg.thanks
No, crusting is inside the nose, and it is really hardened mucus which adheres to the inside of the nasal caviities. Sometimes if it is mixed with blood it can look nearly as dark as coal and often as hard.
It makes it difficult to breath sometimes and that's why we try to keep it softened. When it is hard and you try to remove it it can damage the sensitive lining of the nose and then you get nose bleeds. I once had to be admitted to hospital when I tried to remove said crusting and my nose would not stop bleeding. I finished up having my nose packed and then after a few days it had to be cauterised.
Yes - that sounds more like the problem. I didn't really know how to describe it in my original posting. I shall have to mention ointment to a doctor. I know that you don't want to hear this, but, in a way, its comforting to know that this is one of the problems associated with WG, and not some other upper airway problem.
Have you had nasal swabs done? They will show if you have strep bugs up your nose. If you do have then something like Bactroban will get them in check.
Sometimes it is very difficult to work out whether what is wrong with us is related to our particular vasculitis or one of those common things which happen commonly. I'm so pleased that you don't feel all alone, although I wish we both didn't have this problem. Take care and leave your nose alone (lol).
I have exactly what your describing with your nose as well caused by wegeners. I use sterimar spray that you can buy in boots, this keeps my nose clear if used 2/3 times a day.
I have had similar issues and the E.N & T Consultant recommended Sterimar spray but be aware Sterimar have recalled their product . I had a letter from Boots last week and they gave me a refund for the last spray I had bought.
Sorry to hear you are suffering nasal problems. I too have the same and have to sryinge with salty water up my nose daily. This does help. Hope this helps you.
Before I was diagnosed with WG in 2008 I used to suffer from lumps of catarh and blood together> I was always given anti botics to get rid of it. Since I have been on the Hospital medication I have not had a recurrence until the last seven days when I have been really ill. Again I have had a course of anti botics and its all gone. I do have a nasla spray Nasonex which I take daily. Hope this helps.
Before I was diagnosed with WG in 2008 I used to suffer from lumps of catarh and blood together> I was always given anti botics to get rid of it. Since I have been on the Hospital medication I have not had a recurrence until the last seven days when I have been really ill. Again I have had a course of anti botics and its all gone. I do have a nasla spray Nasonex which I take daily. Hope this helps.
I had this problem before being diagnosed with CSS and have endured it since. My consultant refers to it as crusting. It tends to be a problem mostly first thing in the morning and late evening. The ENT consultant has given me Flixonaze Nasal Drops to be taken once a day indefinitely. After a while nose blowing showed blood deposits and some bleeding. My GP prescribed Naseptin to combat infection and to use the drops as and when needed. I still get crusting/soft mucus mainly blocking the left side until I have a good blow. I have a pollip (another symptom of CSS) in the right side and ensures it is blocked most of the time, which then means mucus congests in my throat before it can be evacuated through the left nostril. The condition is a symptom of vasculitis so I just keep clearing my throat and blow my nose as quietly as possible Not easy when it's difficult to clear. My wife is now an expert at locating cut-price Kleenex tissues because I use so many :). Keep a clear head in adversity!
This is my major problem now - awful blocked feeling all the time with popping and clicking ears too, but lots of clear moucous - sometimes wander where it all comes from - (what a terrible subject) but its comforting to know there are lots of us out there with this problem. I am taking predisolene, much reduced now than when initially diagnosed with WG, but find that after examinations and seeking advice from ent consultant, the only thing that gives some relief is Neil Med Sinus Rinse, which can be bought from Boots Chemist. I had to persevere, and use it twice daily initially, now only once a day. It may be worth a try, if like me, you would do anything to get some relief from this awful sympton.
I don't know about you, but one of the things that I am always afraid of is that it takes such an effort to clear any blockages - such hard blowing against resistance - that I am afraid it will damage something else, such as the ears.
It's my husband who has the WG and he has the problems you are all describing. He used to use the sprays from the chemist but they are very expensive. He now has 500ml bottles of saline and uses a syringe to wash his sinuses 2 or 3 times a day. This is still happening even after a sinus operation. He is very careful when blowing his nose because bleeding can occur but usually he feels blood down the back of his nose and has to spit (sorry)
He also uses oil drops twice a day which keeps the crusting softer and makes it easier to keep clear. The ears are also popping & crackling - he's keeps waiting to pick up Radio 2!!
Hi, I too have these nasal problems and thanks for all the advice on helping the reduction of nasal mucus and crusties (snot & grubs..sorry!!) but I ought to know better because mine are green so prob need antibiotcs too. Retired Nurse...or just tired Nurse !! Will try some of these remediesasap.
Hi mine are green and crusted but they have been since I was diagnosed 11 yrs ago. My ENT consultant suggested Sinurinse which is a nasal spray with saline. Works well when I bother using it otherwise its a good blow in the morning, Sticking my finger up put me in hospital for 2 days with packing ( god it was awful, like a giant hot dog shoved up your nostril) and cauterisation. So be warned
I have had crusting and blockage along with bleeding for 5 years. I use a product called Neilmed sinus rinse which I can only describe as being similar to water bottles on side of hamster cage. You fill it with a saline solution and squirt up each nostril, which washes debris down your throat. Much more effective than Sterimar but highly unpleasant! Just about worth the gagging though
Hi I have had this nasal problem for many years even before the first flare of CSS I used to have extreme nose bleeds which often left me with a crusty and sore nose. I am constantly aware of the'smell' inside my nose and often think it's probably infected but I never tell anyone about it, I just clean out my nostrils morning and night when the smell tells me I need to and carry on with life. Perhaps as a former maxilo facial nurse I see no need to tell anyone because I can cope with it.
I'm new here, and have WG, So many scary symptoms like cyanotic mottling and phagocytic lesions focal to areas of lymph glands and venules, aneurisms, stroke, Ambulatory LOW BP, Ambulatory HIGH BP, accelerated apoptosis, thrombosis, seizures, blindess, heart attack, blackouts, drop attacks, but disgusting, this tops it. Until now its been just alot of mucus, sometimes so thick and sticky or fibrous and large I cant cough it up so I have to bend my head down and of courrse it comes out when youre not alone. Tonsil and Parotid stones but tonight I coughed up thick and sticky and I thought that was it until I picked up my son and was driving, I had to cough 3 times and after the first I felt something semi solid and large on my throat and I havent eaten today but I have been mottled and what I call shedding for 3 days. On the third cough it dislodged but I had to pull it out, looked at it and I said wth, my son said gross, and now I'm noticing my throat is semi raw feeling. I just hope it isnt a piece of my lung or a nodule or lesion in my lung or chest or throat. Is it not enough that my skin and throat and mouth and nose and eyes goes bone dry, ir that both my peripappilary optic nerves are atrophied and only getting worse, or whats with this left eyelid closing all rhe time. UGH And then they say taken prednisone to slow the blindness and then dont takenit because that and the cytoxinnare dangerous in and of themselves. Hmmmm WG or chemical toxicity.
I can tell you one thing I experience alot and finally found out what it is, and its nearly as gross.
Our arteries and lymph venules that are closest tonour skin have sewer blood, left over exudate, infiltrates, even hair. Basically a lot of crap you cant crap out or pee out, and mucocutaneous phagocytosis, elastophagocytosis. I do have to say although when I'm cyanotic mottled or just mottled, I know its just accelerated cell death due to lack of oxygen to the skin and organs, and merely granules, or shwann cells, but fibroblasts popping in and out of your skin all over, are kinda cute and feather like, and tickle, unless of course I'm in an intense parasthesia mode then them zaps sting. Oh do you suffer from Pulsatile tinnitus, migraines, stabbing ice pick in the ear headaches or intermittent kidney pain and rectal blood?
If you ever have any questions, I have researched Vasculitis down to the chemical and cellular level. With one good cell that oroliferates we begin and with one bad cell that metastisises we die.
Dont give up! Hang in there!
Ever wike up gasping for air as if you just ran a marathon or hadnt been breathing for a while. Grunt breathing, throat closing up, sleep apnea, insomnia, I wish all the cycles were consistant I have most of them down
There really isn't any need, to be embarrassed/afraid, in front of us-so to speak- all of us do understand what you mean. We may not have exactly your condition but, and it is a big but, we all get- almost without exception, the following. Aches/pains, anywhere and randomly, 'tummy troubles' (indigestion, constipation/diarrhoea, wind, and so on), along with nose/mouth bleeding-not usually serious but often inconvenient, to say the least! Couple this with skin problems rashes/blotches, fungal infections (the immunosuppressant's are often the cause of these)- and, as you can see a 'snotty' nose is really no big deal! To put it another way there is 'snot' much to be embarrassed about, is there?
I hope that this has helped to, at the very least, feel better about your 'problems' shanat. I can also think of a lot, lot, worse 'things' than a bit of a dirty nose and, put like this, can't you? Sorry if this sounds like I'm 'belittling', your worries, I'm not-I'm just trying to put 'things' in perspective a bit. I could 'dramble on' about all the 'bits and pieces' that I have had, over the years but I won't bore you. I will however send you my, indeed all of our, very best wishes shanat.
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Not easy when it's difficult to clear. My wife is now an expert at locating cut-price Kleenex tissues because I use so many :). Keep a clear head in adversity!
Throat problems
Another question on a someone's behalf - Has anyone diagnosed with Wegener's Granulomatosis (GPA) been diagnosed with a heart condition? 
Do I have WG ?
Has anyone got WG?
'Cause for your Vasculitis' poll is unfair.
