Sinus/Nose Pain: Hi, I’m awaiting results of... - Vasculitis UK

Vasculitis UK

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Sinus/Nose Pain

ShonaGreen profile image
ShonaGreen

Hi, I’m awaiting results of blood tests and chest x-ray from first appointment with Rheumatologist a month ago. My GP referred me as he suspects vasculitis as the fingers on my right hand have been swollen, sore and sensitive with red/purple bruising and spots since Christmas. I saw another consultant for a different issue but when they saw my hand they also thought it could be vasculitis.

I also have hypothyroidism and Raynauds, usually just my feet suffer from the cold so first time my hands have been affected, and when they’re bad I can’t bend my fingers properly or make a fist.

When I saw the Rheumatologist she thought I also had livedo reticularis and she mentioned possible connective tissue problems as my fingers and toes were blue too even though it was a warm room.

In the last month I’ve had a bloody nose for a few days (just when blowing, not a nosebleed) and more recently an uncomfortable pain on the side of my nose. It’s like a shooting pain that lasts a few seconds but happening more frequently. Wondering about sinuses but I don’t have a cold or congestion? I’ve never had nosebleeds or this type of pain before. Just feel like I’m slowly but surely getting worn down with something.

I had lots of blood tests done a few years ago, apart from positive ANA and thyroglobulin everything else was negative. So I’m preparing myself for if all the new blood tests/X-ray are normal, then possible that will just be discharged from Rheumatology again.

I’d really like to know if this nose pain could be related to vasculitis or maybe just coincidence? Thanks for your help.

17 Replies

Hi,

Sorry about your discomfort, I also suffer daily with Severe left eye pain And sinus pain with blood too. Until in I take my prednisolone in the morning

Then 2 hrs later all is ok.

A few years ago I saw ENT Doc

And as usual couldn't find anything wrong 🧐.

Then Eye Doc ...🙄 With same answer.

I do have Wehner's Granulomatosis, aka vasculitis.

Since 2014.

Feet problems too like you feel numb and cold even in a warm bath. I know it's horrible feeling.

I sincerely hope you find a good Doc that will Diagnose your situation promptly and accurately.

Take care

Sfs

Wegners

Thanks sorefeetsoldier, I’m hoping the warmer weather will help our hands and feet!

But the pain in my nose is pretty much there all the time now since last night, when I woke up I had to sleep on my back as lying on either side made it worse. When I take a deep breath it seems to irritate something inside my nose. It’s hard to describe, sounds strange when put it into words!

Hopefully I’ll some news soon and can take it from there 😀

Yes My vasculitus started with nose pain down the side and sinus issues.

foweraker profile image
foweraker in reply to foweraker

I attend addenbrooks hosptial in cambridge, for my vasculitis, can highly recommend

ShonaGreen profile image
ShonaGreen in reply to foweraker

Thanks foweraker. I’ve read some of the posts here and see that Addenbrooks is mentioned a lot. I live in Devon, wonder if they’d refer me there? When I spoke to the Vasculitis helpline it seems there’s a specialist in Exeter too so that’s good if they think I have vasculitis.

foweraker profile image
foweraker in reply to ShonaGreen

Yes definatly go for the referall there, its your right to request this

ShonaGreen profile image
ShonaGreen in reply to foweraker

Hi @fowersker, I’m glad I posted this message as I wouldn’t have known about asking for referral to Addenbrookes, so thank you!

Would Rheumatology usually diagnose vasculitis? I had so much blood taken and the chest X-ray that I’m encouraged they are trying to help me. But if all these tests are normal, then I guess I’ll be discharged from Rheumatology?

Is it usually the Rheumatologist or GP that makes the referral to Addenbrookes? Sorry for all the questions!

Mooka profile image
Mooka in reply to ShonaGreen

I go to addenbrookes. My local hospital wouldn’t do the referral they said my GP had to but this was a few years ago so may have changed. Addenbrookes also do shared care where you can also go to your local hospital for some appointments. Addenbrookes look to be moving to some telephone appoints even after the pandemic has moved on 🤞so this may suit you better. A rheumatologist at my local hospital failed to diagnose my vasculitis even though it was his speciality. He did refer me to an infectious disease professor at addenbrookes where I got my diagnosis. Good luck I hope you get some answers soon.

ShonaGreen profile image
ShonaGreen in reply to Mooka

Thanks Mooka, glad I know about Addenbrookes now. So if Rheumatology can’t help me, at least my GP might be willing to refer me if he suspects vasculitis. I guess when you have these strange symptoms it’s hard not to feel like you’re imagining it, a sore nose is pretty random but getting very annoying! But hopefully I’ll have some news soon 👍

Sinus pain is quite common with GPA (Wegener's). It was my primary symptom. I was initially treated for sinusitis by an ENT consultant, before my vasculitis diagnosis.

Vasculitis falls under the remit of rheumatology, but not all rheumatologists are vasculitis specialists. From my experience, I strongly recommend that you get referred to a specialist clinic.

Thanks Sparkypatrick, I’m grateful for everyone’s responses and at least I know now that sinus pain can be related to vasculitis. I’ll be sure to ask about a referral to a specialist centre too.

I know Rheumatology are extra busy at the moment as catching up with cancelled appointments so will just keep fingers crossed they let me know about my test results soon and in the meantime my sinuses improve!

The sinus pain stopped pretty quickly with prednisolone, thankfully. You don't want to be on high doses of steroids for too long, but there is some immediate relief there.

The ENT put me on a 5 day course of 25mg pred to treat the sinusitis, which helped with all my symptoms for that brief period. As pred would also be the first course of treatment for vasculitis, you could talk to your GP about giving it a trial.

Me too

I just got a follow-up appointment with Rheumatology in a few weeks so will see what's going on then. I wondered if they might send a letter to my GP with details of my 1st appointment but know they're busy so at least the ball is rolling 👍

Nose pain can definitely be vasculitis. Tends to be GPA or relapsing polychondritis. See the website for more details.

Hi .. I would echo whats been said and get referred to the vasculitis clinic at Addenbrookes. I gave my GP details and he referred me and I got an appt very quickly. Its important to get a fast diagnosis to spare yourself years of misery. My local hospital initially suspected lung cancer after xrays. After CT and PET scans dismissed this and suggested EGPA decided they knew better and treated me for the wrong Eosinophillic condition. My wife researched and we got referred and the rest is history. If its a genuine expert in vasculitis at your local hospital then fine..but I suck up a 5 hour round trip to attent clinic in Cambridge like, I suspect, a lot on this site.

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