for those whose onset was sinus-related

[lovetoswim]

I've read many accounts of serious Weg onsets that began with a sinus-related issue, such as infection, cold, earaches, etc.

Had you experienced those issues prior to your sinus-related issue? (I've suffered from sinus infections, colds, and upper respiratory issues over the last 15 years. If I do have Wegs, I've been lucky so far, b/c antibiotics always worked.)

[annekat]

I never had a lot of sinus stuff, more asthma, and any of it was thought to be allergies. With what I now know was the onset of Wegs, I had the big earache followed by a string of sinus infections, for a couple years, which were attributed to allergies. I even got allergy shots for the first time, as the tests showed me allergic to a bunch of pollens and other stuff. The antibiotics worked ok, usually along with pred, but more infections would keep coming along. When I was finally dxed after lung involvement, I had a saddle nose and realized I'd had Wegs the whole time, in combination with the allergies. With treatment, things settled down slowly, but I had further extensive erosion in my nasal cavity. The Wegs meds help the allergies somewhat, and I did stop the shots, but I still have a pretty big problem with grass pollen, coming up soon, and get prescribed a steroid inhaler for the asthma from that, as well as take OTC allergy meds. I think it is pretty common for sinus Wegs symptoms to be chalked up to allergies and sinus infections.

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[lovetoswim]

Thanks, Ann. Did you wake up one day and see the change in your nose? I assume the doctors you saw never noticed a forming of a saddle nose?

[Alias]

My initial onset was ear and sinus related, and I had never experienced anything like it, other than mild seasonal allergies. When I supposedly had an ear infection prior to diagnosis it was completely recalcitrant to multiple antibiotics and only worsened until I was diagnosed and treated for GPA.

[annekat]

Thanks, Ann. Did you wake up one day and see the change in your nose? I assume the doctors you saw never noticed a forming of a saddle nose?
It was weird. No one mentioned it, not even during my overnight hospital stay, right before dx. Just a couple days later, I was feeling my nose and it didn't feel right, so I took off my glasses and looked in the mirror. What a shock. It was like it happened overnight, no warning, no pain. Maybe it had been there longer and my glasses had hidden it. It's more noticeable from the side, and I don't use mirrors much. Others have seen it happen over time and experience some pain along with it. I was doing my nasal rinses every day, had been for a couple years with all the sinus infections, so I was focusing on my nose a lot, so you'd think I would have noticed it before, or someone would have, unless it happened very quickly.

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[whatthewhat]

Our daughter had "allergies" and then the year she was getting more sick before diagnosis she had "sinus" infections a few times "because of her "allergies." I wish I could just do air quotes in person lol. Anyway, she was 14 at the time of diagnosis.

[lovetoswim]

Our daughter had "allergies" and then the year she was getting more sick before diagnosis she had "sinus" infections a few times "because of her "allergies." I wish I could just do air quotes in person lol. Anyway, she was 14 at the time of diagnosis.
I am so sorry your child is going through this. Were antibiotics given for her numerous sinus infections?

[lovetoswim]

Annekat, I missed your post. Wow, I can't believe they didn't see the change in your nose. Did you get it repaired?

[annekat]

Annekat, I missed your post. Wow, I can't believe they didn't see the change in your nose. Did you get it repaired?
No, it hasn't been repaired. I just figure it happened quickly and isn't that noticeable with glasses on. Once I saw it, I went in to my ENT, who had seen my nose many times before, and when he saw it he was sure I had Wegs and he and his nurse stayed late to do a nasal biopsy on the spot, which proved it. Then I got to show it to my pulmy, who'd also seen it many times, and he was also convinced. I truly think it happened more or less overnight!

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[mishb]

As a very young child (1 years old onwards) I was in and out of hospitals with ear, sinus and throat infections/tonsilitis.
Chronic hayfever was the diagnosis.
In my 20's I got Glandular Fever (Epstein Barr Virus/Mono), which sidelined me for a few months.
In my 30's I had persistent Conjunctivitis and throat infections
In my 40's - ear, sinus and throat infections again, that antibiotics didn't help - Wegener's (no saddle nose)
Now in my 50's - Remission

Is it possible that WG has been smoldering since a child - who knows, but I personally don't think so.

I believe, that if antibiotics are helping you, then you are probably lucky enough NOT to have Wegeners

[lovetoswim]

Hey Michelle,

I had a few sinus infections over my lifetime. 5 years ago, I got the HiN1, and either another flu or very bad sinus infection that year. I also started teaching young children that year in an older school.

The last year and a half I had almost constant phlegm in my throat, hoarseness, and fatigue, finally ending with a "raging" sinus infection that showed some "wacky" bacteria (per my ENT) in the nasalscopy he did. I ran to urgent care when I got sick again, and had a chest x-ray and they said I had pneumonia. On antibiotics again. follow up showed pneumonia clear, but I had one nodule.

In the midst of all this, I saw an immunologist who ran blood work and found above normal pANCA level and referred me to a lung doc for a biopsy to see if it was Wegs.

Ironically, I have been feeling better than I've felt in years over the last 2 months, but now my b/f and my grandson are sick. Crossing my fingers that I don't get sick again. I am seeing a rheumy this week.

[lovetoswim]

Is it possible that WG has been smoldering since a child - who knows, but I personally don't think so.

I believe, that if antibiotics are helping you, then you are probably lucky enough NOT to have Wegeners I read that life expectancy after diagnosis of Wegs is 2 years without treatment. If that is true, it doesn't seem possible Wegs could be dormant for years, is it? I wondered if my prior issues were Wegs-related, but that was 10 years ago (vertigo for a year), and Lyme's disease.

[Rose]

Hi Lovetoswim

I think when Wegs attacks the vital organs like the lungs and kidneys then you are looking at that scenario. Wegs, I am sure, can be present for many years without treatment. I have read many stories of people wondering if their sinus issues, joint issues, muscular issues, bowel issues etc that they had been suffering from were Wegs related and only when the Wegs became very active and attacked other organs did they get a diagnosis of Wegs and finally, with treatment, improvement in the symptoms they had had for many years. So I would not be surprised if your prior issues were indeed related to Wegs.

Rose

[SophiasMom]

I had multiple ear infections and antibiotics (adult onset) and shortly before my hospital and dx, fluid on the ears. I have resulting mild/moderate hearing loss and irritating tinnitus. I am hoping that once I get to full "remission" that my hearing and tinnitus will improve, but I'm not holding my breath. :)

[drz]

I read that life expectancy after diagnosis of Wegs is 2 years without treatment. If that is true, it doesn't seem possible Wegs could be dormant for years, is it? I wondered if my prior issues were Wegs-related, but that was 10 years ago (vertigo for a year), and Lyme's disease.

Wegs is often NOT diagnosed until it gets very serious and life threatening even though in hindsight many people can recall symptoms over the past several years. But these symptoms are often misdiagnosed and thus not treated correctly. Such cases may have simmered or smolder for awhile before it flared enough to get diagnosed and treated appropriately. Then those symptoms usually disappear. My joint pains, foot pain, nasal crusting and bloody noses all improved or disappeared after my diagnosis and correct treatment. If I had not received appropriate treatment after my diagnosis I would have died in a few weeks. Even with some very aggressive treatment my survival was very iffy for several weeks.

My Weg expert at Mayo said my history of frequent sinus and ear infections may have predisposed me to getting Wegs many years later.

My hearing loss was permanent but after getting a BAHA my speech returned to near normal and the tinnitus mostly disappeared.

[lovetoswim]

I had multiple ear infections and antibiotics (adult onset) and shortly before my hospital and dx, fluid on the ears. I have resulting mild/moderate hearing loss and irritating tinnitus. I am hoping that once I get to full "remission" that my hearing and tinnitus will improve, but I'm not holding my breath. :) I've had tinnitus most of my adult life. I also get ear fullness, but thankfully, no ear aches to speak of. This past week, the pollen count is off the charts, and my ears have been screeching nonstop with tinnitus. Uggh

[lovetoswim]

Hi drz, what is a BAHA?

[lovetoswim]

drz, that's worrisome, especially since I saw my ENT yesterday and brought my blood work in, he scoped my sinuses and declared them to be near perfect condition and totally believed I did not have Wegs. He has treated patients with Wegs and believes I suffer from chronic sinus issues (due to deviated septum, which had been corrected, but failed) and one small nasal polyp.

I don't know what to believe. He felt my blood work didn't prove I had Wegs, yet he didn't really know a lot about ANCA readings. :confused1:

[annekat]

Also, atmospheric pressure changes can affect the ears in negative ways. With pollens and constantly changing weather, spring can be miserable. I've always had seasonal allergies, but I feel like Wegs damage to my ears and eustachian tubes has made me more sensitive to the pressure changes. Although I know a few non-Weggies who are sensitive to it as well. My tinnitus comes and goes and I'm not sure how related to seasons. Right now it isn't bad at all. My first tinnitus ever was a few years before Wegs came on. It was very weird and low pitched, and sporadic, and I thought it was coming from outside somewhere. When I realized it was from my own head, I started having minor dizziness, too. Then it all went away for a few years. But I wonder if it was a precursor to Wegs. What a weird disease.

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[annekat]

Irene, you may not have Wegs... I never got a glowing report from my ENT like that, even before Wegs was discovered in me. The ANCA thing is a mystery to me, too. The rheumy should have some answers there. I can't wait!

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[annekat]

Irene, I just saw further back that you had vertigo for a year! How awful... Sounds like it was connected to Lyme's, which I know nothing about except that it's awful. I have sporadic and troubling vertigo. Always trying to fight it off by limiting caffeine, having certain meds on hand, some OTC stuff. Staying well hydrated seems to help. My ENT thinks I could have Menieres disease, which comes and goes. I also suspect Wegs and weather, plus balance issues from double vision, bad feet, and lately using crutches. It gets so complicated to figure out. I had vertigo right after a physical therapy session a couple​ weeks ago and am not going back. Since then, I've managed to overcome it and am doing OK. I hope you don't get vertigo again.

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[MikeG-2012]

I don't know what to believe. He felt my blood work didn't prove I had Wegs, yet he didn't really know a lot about ANCA readings. :confused1:


There are other kinds of ANCA related vasculitis. Do a google search for those and see if your symptoms match up with one of them.

[annekat]

There are other kinds of ANCA related vasculitis. Do a google search for those and see if your symptoms match up with one of them.
The two I'm aware of are microscopic polyangiitis (MPA) and Churrg-Strauss, l think, besides Wegs. Still seems weird that the good blood work and other absence of symptoms would be there with P-ANCA. We'll see what the rheumy has to say!

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[lovetoswim]

Irene, I just saw further back that you had vertigo for a year! How awful... Sounds like it was connected to Lyme's, which I know nothing about except that it's awful. I have sporadic and troubling vertigo. Always trying to fight it off by limiting caffeine, having certain meds on hand, some OTC stuff. Staying well hydrated seems to help. My ENT thinks I could have Menieres disease, which comes and goes. I also suspect Wegs and weather, plus balance issues from double vision, bad feet, and lately using crutches. It gets so complicated to figure out. I had vertigo right after a physical therapy session a couple​ weeks ago and am not going back. Since then, I've managed to overcome it and am doing OK. I hope you don't get vertigo again.
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Hi Anne, vertigo is terrifying and debilitating. I've had episodes where I couldn't move a muscle for 24 hours. Just took xanax so i could sleep it off. I literally crawled to the bathroom, unable to move my head. I felt like someone was throwing my head to the ground. The year long vertigo was different, but awful. Like being seasick 24 hours a day. I was told it was "viral." Uggh, I will PM you about my vertigo episodes, tests and diagnosis. Doctors should be careful about quick diagnosis of Meniere's, which is also rare, and usually accompanied by hearing loss (which i've had for 30+ years), ear fullness (also have that) and drop attacks. (had 1 of those). I was not diagnosed with Meniere's by 90% of the docs I've seen, only 1 said I did have it. Unfortunately, so many meds cause dizziness. But dizziness is different from vertigo. Some of the symptoms I had with the year long vertigo was : head felt like a bowling ball, I was groggy, spacy. Walking in the dark, fans, loud noises, flourescent lights made me feel off balanced and set off tinnitus. When walking, it felt like I never made contact with the ground - as if I had marshmallows in my shoes. Of course, tennis, swimming, basketball was impossible. I was only able to long distance walk, but was grateful for that much. It was so bad, I couldn't even use my electric toothbrush. Then one day I woke up with a clear head and it was over. It lasted 8 months, every single day, all day long. I had a similar attack in the 1980's, lasting almost a year, but I was much younger and it was not as severe.

[annekat]

Wow, Irene, that sounds awful, and I definitely know people in the general population who've had worse or longer lasting vertigo than mine, and I never hear of any definitive answers as to why they have it. If you research it, there are so many possible causes. My ENT didn't dx me with Menieres, only suggested it as a possibility, and asked me to keep a log of events, which I did for awhile. I do have significant hearing loss from the Wegs, and additionally​, there are times when I get tinnitus along with an over-sensitiviy to noise in my ears, which I've read is a Menieres hallmark. I did have some drop incidents a year or two ago. And my ENT said "some people" are sensitive to barometric pressure changes, producing a full, muffled feeling which I have also experienced. So it is a mixed bag of possibilities. I know there are some clinics that specialize in balance problems, in cities of some driving distance from here. For now, I seem to be over the latest recurring incidents and am trying to be really careful. I limit caffeine greatly, stay well hydrated, try to use less of the meds, and try not to get stressed out, which I've also found can trigger it. I hope we can both keep from having it again, and you can get some insight on the tinnitus you've been having. Best of luck to you!!!





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[lovetoswim]

Hi Anne, my tinnitus has been with me most of my life. I ignore it for the most part, but in the Spring, it seems to be a lot worse. Have you ever heard of Spring vertigo? This cold, dry, windy weather we have is the worst on my balance and ear ringing. Not sure what your climate is like in the spring. I also find that muggy, humid, cloudy days are when I feel the best. When temps range from the 50's to 60's my balance can be tempermental. Sounds like you could possibly have Menieres.

It's ironic that when I am the most streed (like when I have to fly, which I HATE) I have no balance problems. It comes on usually without any specific reason or warning.

Do you ever take Dramamine when vertigo comes on?

[annekat]

I have taken Meclizine, which is one of the versions of Dramamine. Later the ENT said that lorezepam works better for vertigo, so he prescribed that and it's what I take now, either as preventative or when an attack comes on. But it is one to be careful with, as it can set up a dependency and keep the ears from retuning to normal. So I try to take less than what he prescribed. I'm finding lately that drinking a lot of water helps. I also find that one adult dose of pseudoephedrine help. And yes, it does seem to happen more in the spring and fall when there are more weather changes and allergens floating around. So I also take generic Zyrtec at this time of year, or other OTC allergy meds such as Allegra. In May, when the grass pollen hits, I get asthma and will probably need a steroid inhaler. I've heard or been told that Menieres is more of a syndrome than a disease, and whether I have it or not, I feel there are a lot of other factors involved, such as Wegs damage to my sinuses, ears, and lungs, combined with allergies. I think even good docs have a tough time pinning down any one specific cause for some of these things.

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[lovetoswim]

I have taken Meclizine, which is one of the versions of Dramamine. Later the ENT said that lorezepam works better for vertigo, so he prescribed that and it's what I take now, either as preventative or when an attack comes on. But it is one to be careful with, as it can set up a dependency and keep the ears from retuning to normal. So I try to take less than what he prescribed. I'm finding lately that drinking a lot of water helps. I also find that one adult dose of pseudoephedrine help. And yes, it does seem to happen more in the spring and fall when there are more weather changes and allergens floating around. So I also take generic Zyrtec at this time of year, or other OTC allergy meds such as Allegra. In May, when the grass pollen hits, I get asthma and will probably need a steroid inhaler. I've heard or been told that Menieres is more of a syndrome than a disease, and whether I have it or not, I feel there are a lot of other factors involved, such as Wegs damage to my sinuses, ears, and lungs, combined with allergies. I think even good docs have a tough time pinning down any one specific cause for some of these things.

Sent from my MotoE2(4G-LTE) using Tapatalk Hi Anne, I didn't PM you b/c i think we covered the vertigo issue!:rolleyes1: Did you read my thread on my visit to Univ of Penn?

[annekat]

Hi Anne, I didn't PM you b/c i think we covered the vertigo issue!:rolleyes1: Did you read my thread on my visit to Univ of Penn?
Yes, I did see that, it didn't sound like you got much out of it... Maybe there will be bloodwork results that will tell her more? Or you will have to get sicker to give her more clues? Will look again to see if I missed anything.

BTW, you asked me if I'd ever taken Dramamine for vertigo, and I answered you, which led to other things... I don't think either vertigo or Wegs are ever completely covered. So far, anyway. There are umpteen posts about vertigo in the archives.

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[Rose]

I have posts about vertigo I was experiencing in the archives. Eventually had an MRI and was diagnosed with Mastoiditis. The problem the ENT had is that he did not know if this was caused by Wegs or an infection so he treated me for both with antibiotics and increase in prednisone as well as as cortisone nasal rinses. it did the trick...no more vertigo.

Rose

[annekat]

That is interesting, Rose. With my big ear infection that no one knew was Wegs, after it cleared up with 3 different antibiotics and pred, the ENT treated me with 5 days of IV antibiotics to prevent mastoiditis. All looked OK. A few years later, while on Wegs treatment, I got an MRI for a different reason, which mentioned on the side that the mastoids were fully opaque in the image. Not sure what that meant, but the ENT saw it, and no mention was made of mastoiditis. I think the doc said they were full of fluid and not draining, but like it was a permanent condition related to all the damage done to my nasal cavity, ears, e-tubes, etc., and not like it was a problem. Perhaps I misunderstood something, but am obviously confused. I also have vertigo, which comes and goes, but all he's said is it could be Menieres, and I should keep a log of events, avoid certain things, have certain meds on hand, etc. Now I'm wondering if the mastoids could be involved here​, and why wouldn't he say so? I guess I'm overdue for a visit to him, or a new one, for some further explanations. Thanks for your post.

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[lovetoswim]

I have posts about vertigo I was experiencing in the archives. Eventually had an MRI and was diagnosed with Mastoiditis. The problem the ENT had is that he did not know if this was caused by Wegs or an infection so he treated me for both with antibiotics and increase in prednisone as well as as cortisone nasal rinses. it did the trick...no more vertigo.

Rose

wow, Rose, that's serious. what were your symptoms?
OTOH, you were fortunate (?) to get a diagnosis that was "curable" since most vertigo is only resolved by waiting it out, while being spaced out on meclizine or dramamine.

[Rose]

HI Lovetoswin and Annekat

If you put the word 'Vertigo' into the search box you will find the thread I started when I first began experiencing symptoms. It is on page 3 of the archives and dated 10/15/2011. All my symptoms are well documented there. After writing the post today I searched for the thread and reread it. It definitely was a Wegs flare as you will see. This is a very sneaky disease. Googling "Wegeners Granulomatosis Vertigo" you will find quite a few case histories of this and in some cases the Wegeners presenting with vertigo.

Rose