New Member all the way from the UK!

[Znr91]

Hi everyone

I was diagnosed with Wegners Granulomatosis in 2006, when it affected my lungs. I was treated with cylco and rituximab and was on high doses of prednisolone. After I started to get better the doctors switched me to mycophenalate mofetil. I was doing well for 3 years and had a relapse in 2010 so I had another course of cylco and rituximab since it worked the first time! The disease which I thought was put to bed decided to wake up again! Last year in 2014 my ANCA result came back positive and my doctor decided to take a prophylactic approach and treated me with rituximab. I have recently had really bad sinus problems and I was wondering whether anyone could tell me what the signs and symptoms are of wegners affecting the nose?

[mishb]

Hi Znr91 and welcome to the best WG forum around.

WG affecting the nose - well, many have chronic sinusitis conditions. You may also have issues with crusting or even being able to blow massive slug like creatures out of your nose.
Some don't even know they have issues with Wegener's until the bridge of the nose collapses - this is called a saddle, or saddle nose.
You may also get a blood nose, seemingly from nowhere with no reason why its started.

For me, I had the slug like creatures, sinusitis that didn't respond to antibiotics, crusting way back in the sinus area not in the nose itself, so you need to use a spray or wash to get them out.
I also cannot breathe through my nose due to the crusting. Once the crusts are removed with a wash, they start to come back again within an hour. I also have a blood nose most days.
Also the sinus infections can cause blocked ears thereby giving hearing loss. Can also cause chronic headaches, eye conditions and even teeth and jaw issues.

Hopefully someone else will come along and give you their version.

What conditions are you having with your nose?

[Znr91]

Thank you so much Michelle. I have been having sinus problems since last year which gave me really bad headaches. The headaches subsided after I was on antibiotics. However my sinuses have been playing up again and I have experienced crusting, rhinorrhea, a blocked nose and in to put the cherry on top my ears are blocked which is quite frustrating! I am going to see a specialist in a couple of weeks so fingers cross they will find a solution. It has been really hard lately especially now that I am in my last semester at uni and I don't know how to cope with this and Uni. Not a lot of people know about wegners and what I am going through, I am glad there is a support group online!

[Jayne 14]

Welcome Znr91
Im also in the Uk ( diagnosed 2014 )
My crazy nose was what I got diagnosed thro
Like Mishb huge slugs from my nose , random nosebleeds & no ability to breathe thro my nose
I've got saddle nose ( improved a bit since treatment started )
I have pain too when the monster slugs are forming & a horrid dribble type mucus once gone , and my gums are affected too : bleeding when knocked / brushed / eaten anything crunchy
Yep can also tick the headaches / eye / jaw issues
But , thank god for this site
Whenever I'm low , in pain , have a new symptom , this amazing kind understanding group of Wegs help me
Comfort advice & knowledge , and love for all helps me through & will help you too
U are not alone
Welcome & hugs on your journey .


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[annekat]

Welcome to the forum! Michelle has said what there is to say about sinus, nose, and ear involvement, for most people. I also have the saddle nose, but remember that if you get the nasal and sinus issues under control early, you will run less risk of that, and many with these issues don't have it. In my case and some others, there was other permanent damage to the whole area due to erosion of the thin bones that delineate the individual sinuses and structures of the nasal cavity. In my case, these thin bones are now gone, so that I no longer have sinus cavities, a septum, or turbinates, just one big open nasal cavity. For me, this is not a problem, since all the tissues are healed, and with no sinuses, there is no place for mucus and bacteria to collect and cause infections. For others, there are still unhealed tissues and resulting pain. The erosion under the eye sockets has caused some double vision, which is manageable but annoying. And one ear drum has eroded away, along with the little bones that help project the sound into the inner ear. Amazingly, I can still hear some in that ear, but not much. The other ear is doing pretty well, and hears a lot better, but there is permanent hearing loss in both, due to nerve damage during an ear infection and to damage to the eustachian tubes. A lot of this happened while I was being treated for WG, but the sinus and ear stuff started 2.5 years before I was actually diagnosed, so it went undetected and untreated all that time. That is not uncommon. You are lucky that, already knowing you have WG, the nasal stuff came later and you are able to catch it in time to get it treated properly and probably avoid this extent of damage. And many with hearing loss do regain it. I know there are some expert WG docs in the UK and hope you are able to access them. In any case, I think you will pleased at the quality of information, support, and friendship available on this forum. Knowing you are not alone is half the battle won. Best of luck to you in getting these issues dealt with, and keep us posted!

[Znr91]

Thanks so much Jayne, I hope you are feeling better, what treatment are you on? if you don't mind me asking?

Sometimes I feel really low, especially being on immunosuppressant's, when you tend to catch every new bug out there and people around saying, you're always ill!
I am thankful that I have a great support system at home, but it would be really nice to relate to others with WG, and how all of you are coping with WG :)

[Znr91]

Thanks Anne, for all the information it has really helped, it so overwhelming how WG can be so detrimental on parts of the body that I never new it could fully affect. WG first affected my lungs so I am an expert when it comes to my lungs but the nasal cavity is all new to me. How did you cope with everything, emotionally? I hope that you are doing much better.
I was diagnosed with WG at 14 so I have always been surrounded by really good rheumatology doctors. Thank you again for the all support and that goes for everyone!

[Jayne 14]

Znr91
I'm on 20 mg of MTX weekly, 10 mg prednisone daily , co calciferol , bactrim , frolic acid weekly
Have been on this dose of MTX since January this year and it is tougher
And have had to have 2 separate weeks of due to really bad sinusitsis ( very very painful - whole sinus area swollen & huge & treated with antibiotics )
I have found the whole journey has peaks & troughs
The big dose last yr of prednisone lead to weight gain , insomnia & also huge energy & feeling of well being
I find I feel the worse / lowest on the day & after I take the MTX , but find comfort that although very slow my symptoms are easing . My swollen crazy nose is looking better , I can actually breathe thro it sometimes
It's a massive adjustment to your life - slowing down & pacing yourself
My husband , 2 boys & good friends are also amazing & lift me when I need lifting
What treatment are you on ??
How do you feel you're coping ????


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[annekat]

Thanks Anne, for all the information it has really helped, it so overwhelming how WG can be so detrimental on parts of the body that I never new it could fully affect. WG first affected my lungs so I am an expert when it comes to my lungs but the nasal cavity is all new to me. How did you cope with everything, emotionally? I hope that you are doing much better.
I was diagnosed with WG at 14 so I have always been surrounded by really good rheumatology doctors. Thank you again for the all support and that goes for everyone! I'll see if I can answer that. I didn't get diagnosed until age 58 and am now 62. I think it might have been worse emotionally if I had been as young as you were or in my 20's or 30's. There are people on here at those ages who might respond. And then there are quite a few around my age, or in their 40's and 50's. I guess the thing that is hard for me emotionally is that there aren't many in my life who can offer me much support or understanding, as I'm single, and quite used to it, but it is hard sometimes. That is what is so nice about the forum; it is truly a support group, and we all understand, because we all have it. How do I cope? Just one day at a time. I'm really not in nearly as bad a shape as some people with this illness. Even with all the destruction in my nasal cavity, since as I said, it doesn't cause me pain or really affect me much. I can breathe just fine through my nose, most of the time. I cough a fair amount because mucus drains down into my bronchial tubes and collects there. I'm constantly having to explain to people that it's not as bad as it sounds and it's not contagious. I'm sure you have been through some of that sort of thing, too. It's so true that WG has many variations and can affect people in very different ways, and can change its mind about what part of the body it's going to target. Sinus, lung, and kidney involvement seem to be the most common and most talked about on here. You are unusual in that you got the lung stuff first and then the sinus. For me, it was the other way around. For a couple of years, it just looked like I had a string of sinus and ear infections and some allergies, and I was treated in the standard ways for all of that. Then, when it went into my lungs, it became serious enough to get a diagnosis, and my saddle nose appeared about the same time, so it became obvious that I'd had Wegs for quite awhile. Some of us have what we call 'smoldering Wegs', which can happen before dx or after treatment when we think we are better. Well, I could go on and on, and you've had Wegs longer than I have, but it is very helpful to read the experiences of others on here, and some of us (not me, especially) are quite knowledgeable. And don't let me scare you with all the talk about my nasal cavity, as there is every chance that won't happen to you.... you've gone all this time without sinus involvement, and now that it's appeared, it will be easier to nip in the bud than if you'd had it 'smoldering' for years. Good luck! I look forward to hearing how things go for you.

[renidrag]

And yes Anne, you are one of "those quite knowledgeable".
Dale

[annekat]

And yes Anne, you are one of "those quite knowledgeable".
Dale I am? Well, thanks, Dale! It is really only because of this forum and what I've learned here, and how I've applied that knowledge to my own situation. Since doctors aren't a lot of help in that department. I've also absorbed a lot of info here that doesn't necessarily apply to me, but to others with different issues. We have to look out for each other here! And even if I absorb info like a sponge, it doesn't mean that I always repeat it accurately, so am always ready to be corrected and such. :smile1:

[drz]

I am? Well, thanks, Dale! It is really only because of this forum and what I've learned here, and how I've applied that knowledge to my own situation. Since doctors aren't a lot of help in that department. I've also absorbed a lot of info here that doesn't necessarily apply to me, but to others with different issues. We have to look out for each other here! And even if I absorb info like a sponge, it doesn't mean that I always repeat it accurately, so am always ready to be corrected and such. :smile1:

If we have learned enough about our disease to survive it and try to maintain our health, we probably know more about it than most doctors we encounter outside of the Weg experts we trust for advice and treatment.