Possible nasal vasculitis?

[maisie30]

Advice please.. I'm a 45 year old women.

I've had nose pain and earache on my right side for at least a month. My nose and sinuses are very tender and I have consistent earache, eye pain and headache on the right side. Also my right nostril gets a lot of crusting and occasional nose bleeds, which I didn't have in the past.

I saw the doctor who diagnosed rhinitis/sinusitis and prescribed nasal spray which seemed to make the pain worse. He also gave me 7 days prednisalone which I think had some effect on the pain. An X-ray showed a slight deviated septum but he's sure this wouldn't cause my problems. I had a very productive cough too but my chest X-ray was clear this time. Bloods tests for common allergens was also clear, but despite this the Dr says he's sure it's allergies! I'm really frustrated with this pain and irritation. I plan to go back to the ENT Dr. a third time.

I got my eyes checked as my vision has really deteriorated over the last year or so, I was prescribed glasses for near sightedness. I saw the dentist who couldn't find any problems.

The last year I've also had inflammation in different areas of my body, constant night sweats and tingling/shooting pain in hands and pain (not current). CRP is consistently higher than normal but no disease diagnosed to date! Does this sound connected Im concerned that I was quite well until a year ago and now I seem to always be in some kind of pain. any thoughts/advice welcomed. Thank you

[Hidden]

Hi Maisie,

Whilst 4 weeks of sinus symptoms wouldn't necessarily be a red flag for Vasculitis ( there are over 18 different types ) your other symptoms ( especially night sweats and raised CRP ) means they really should rule it out.

As Vascultis is a rare, complex disease it's not something that GP's have much knowledge of. ENT's are surgeons and as such aren't the specialists in medical management.

To rule Vasculitis in or out definitively you really need to see a Consultant who sees Vasculitis patients on a regular basis, usually a Rheumatologist. Unfortunately not all Rheumatologists are equal when it comes to Vasculitis but there are pockets of excellence up and down the UK.

Please phone or e mail the VUK helpline and either John or myself will do what we can to help. Here is the link

vasculitis.org.uk/helpline

Best wishes

Lynn

[gilders]

These are very similar symptoms that I suffered with before things got much worse, very quickly. I was eventually diagnosed with Wegeners Granulomatosis, unfortunately after a lot of damage had been caused.

You really do need to get in touch with Vasculitis UK and see a vasculitis specialist.

[Omil04]

Hi masie, snap eye, ear , nose. Went to the see GP re ear , said it was blocked been using drops for two weeks not help got appointment again on Tuesday. Nose crustations and light blood when blowing , nostril very tender. Eyes left side weepy and puffy. Have flag the eyes up with my GP who is referring me . Just lately it been loads of silly problems, headache . So you are not alone . At the moment I am always playing catch up try to get some control , and not winning , but we will keep going kind regards lorraine

[AmyS1]

Same symptoms similar age this was the start of relapsing polychondritis a form of vasculitis.

[ReidyWG]

I lost my sense of smell and went dead, joints were all swollen. My diagnosis wasn't made until my sinuses started reading and didn't stop. Your troubles sound very, very similar. Push for an ANCA test.

[saguarosharon]

I've had a similar issue, the redness and sensitivity progressed to bleeding. I have severe nose bleeds about every several hours. Am not anemic, but weak and dehydrated. Can't go to the ER, "not urgent enough", but am learning to budget my energy. The bleeds eventually clot for a while for me to work.

I had severe deviated septum and major reconstruction surgery. THE WORST pain EVER. This current condition, where the build up has progressed, is similar. I understand and empathize with you. With Addisons on board and other Autoimmune issues, the pain can sky rocket. Illustrated by an elevated bp and pulse. With Von Willebrands, I have to be careful about bleeding/bruising. Since this process is subject to doctors packed schedules, I'm learning to cope. It's not ideal, but there isn't much we can do. The tumors/growths are reoccuring and progressing to my lymph nodes... Keep a avenue of expression open. From coloring to excercising, it really helps (and healthly too).

[Christophene47]

Hi Maisie, I wonder what you have learned since you posted a year ago? Nasal crusting, bleeding, sinusitis, visual disturbance are all associated with GPA (Wegener's). We're you able to get tested for ANCA? Wondering what happened.?