Sinus issues - what to expect?

[tmesis]

Hi all. I was diagnosed with GPA back in 2005, when my kidneys failed and I was hospitalised for about a month, on dialysis and plasma exchange. The kidneys got a bit better and I've had chronic stage 3 ckd since then but no need for dialysis. After the initial dose of prednisolone and cyclophosphamide I was on mycophenolate mofetil and prednisolone for a couple of years, then a low dose of azathioprine and prednisolone for about 10 years or so, until I came off meds entirely about 5 years ago.

My kidney function is still stable but I've had increasing nasal 'stuffiness' these last couple of months which my kidney consultant thinks might indicate a flare up. And my latest blood test showed positive anca for the first time since 2005, so I think he's probably right. My symptoms are basically that my ears and nose feel stuffed up all the time and it feels like a lot of effort to swallow. I've had a bit of vertigo and every night I jolt awake several times while trying to fall asleep. I've not had any nose bleeds or pain in my sinuses.

I've got an appointment with an ENT consultant in a couple of weeks and just wondering what to expect, as I have never had sinus issues before this. I've been told they will stick a camera up my nose. Would inflammation be visible by that alone, or will they need to take a biopsy? Does anyone have any relevant experiences to share?

I kinda wish they'd just assume it's GPA and whack me back on the steroids before my kidneys conk out for good, but I guess doctors know best (I hope).

[Pete]

When I was dxed almost 11 years ago, the nasal biopsy confirmed I had GPA. I don’t remember too much about it as I was “twilight” sedated (conscious but unaware) as I was also getting a bronchoscopy immediately following. However, on my way to the ozone, I promised the docs that whoever got the sample that led to dx would get a steak dinner. The ENT won the prize.

Do you rinse your sinuses at all. When I have nasal congestion (usually from a cold or allergies), I find a saline sinus rinse helps. I also take 10-20 mg of phenylephrine for a week or so. That has helped me keep things clear.

Hope your appointment goes well.

[John S]

Before I was diagnosed with GPA, I had frequent very large nasal crusts. I called them caterpillars. They were huge. An ENT did a biopsy and surgery on my septum. Now I rinse daily with Neil-Med. No more crusts.
I don't know if it is the daily rinse or the Rituximab every 6 months but I am very happy that symptom is gone, as well as many others.

[Ashley37]

My symptoms are basically that my ears and nose feel stuffed up all the time and it feels like a lot of effort to swallow. I've had a bit of vertigo and every night I jolt awake several times while trying to fall asleep. I've not had any nose bleeds or pain in my sinuses.

I've got an appointment with an ENT consultant in a couple of weeks and just wondering what to expect, as I have never had sinus issues before this. I've been told they will stick a camera up my nose. Would inflammation be visible by that alone, or will they need to take a biopsy? Does anyone have any relevant experiences to share?

I kinda wish they'd just assume it's GPA and whack me back on the steroids before my kidneys conk out for good, but I guess doctors know best (I hope).[/QUOTE]


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[Ashley37]

My symptoms are basically that my ears and nose feel stuffed up all the time and it feels like a lot of effort to swallow. I've had a bit of vertigo and every night I jolt awake several times while trying to fall asleep. I've not had any nose bleeds or pain in my sinuses.

I've got an appointment with an ENT consultant in a couple of weeks and just wondering what to expect, as I have never had sinus issues before this. I've been told they will stick a camera up my nose. Would inflammation be visible by that alone, or will they need to take a biopsy? Does anyone have any relevant experiences to share?

I kinda wish they'd just assume it's GPA and whack me back on the steroids before my kidneys conk out for good, but I guess doctors know best (I hope).


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My GPA started with sinus involvement. There was a lot of sinus pressure like an infection. I woke almost every morning with the remnants of a bloody nose or blood rushing from my nose. This was a big indication that my wegs was making a fuss.. ( once I knew that’s what the culprit was). Vertigo and balance issues are just beginning to be an odd issue for myself. I assume GPA. The swallowing could be the tracheal stenosis ( I think that’s the right thing [emoji2358]).

I have experienced the scope. My ENT has his assistant spray a numbing spray first, although the spray is worse than the scope. My doctor is very gentle so it’s not uncomfortable and doesn’t last long. Upside- you might get to watch this procedure yourself and it’s WILD to see. Inflammation will be visible.

Best of health to you!
Love and light,
Ashley


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[Dirty Don]

GPA attacked my sinuses and lungs...surely was 'wild' to watch the GPA spots as the ENT merrily pointed them out to me...in color no less. Not a painful exercise, but irritating and eye opening. If you don't already, start sinus rinses as often as needed. They also clear up mucous nearest my ears and it's an odd feeling, but better afterwards as part of my GPA damage was in the Eustachian tube. Biopsies are best and most probable in your case, they'd already taken mine thru the lungs. Pred is good, but not great...get off it if you can & use it always as a way to feel better, temporarily. Best to you!

[tmesis]

Thank you guys for sharing your experiences. I've had my ENT appt now and I'm hugely relieved to report that there isn't much wrong at all at the moment - just a bit of inflammation which a prescription nasal spray will hopefully sort out. I'm staying med free for now and they're going to check my sinuses and ANCA levels in 3 months.

The nasal examination felt a bit weird but not at all painful, btw. I found it less uncomfortable than a Covid test.

[freakyschizogirl]

Hi tmesis

Glad to hear the examination went well.
When you've been in the game a fear years (and feel brave enough) get them to allow you to see what the camera shows.
I have a hole in my septum so like to keep an "eye" on it myself.

Out of interest what nasal spray have they recommended? i went through several of these and non were that great in the long run. You will hear many people on here mention NEILDMED sinus rinse and would recommend this to help with your symptoms. That, or ensure you keep your nose moist. They used to recommend Vaseline but coconut oil is also very good.