GPA vasculitus with nose pain

[35merlin]

Hi. My friend has ( we think) GPA vasculitus and at the moment has a very painful, burning pain in his nose. He is seeing a specialist but has anyone experienced this or have any tips/ ideas of types of medication that may help?

[Jenfernah]

I have churg strauss vasculitis and have been experiencing the same thing over the last couple of days. In seeing my consultant next week so if I did anything useful out I will let you kboww

[35merlin in reply to Jenfernah]

Hi. Ok thanks, yes that'd be helpful if that's ok.

[sasefc]

I have wg. I have been diagnosed 3 years. In September I had this problem for the first time and it turned out to be a sinus infection. Had the burning nose again last week. Sinus infection again. I had antibiotics both times. X

[Alpsy]

Hi,

I have WG and that's one of the symtems how mine all started . My nose was 3 times the size and extremely painful and I lost part of my septum and hav lost more since. I have a fantastic ENT Consultant and also a fantastic Rumy so if they have them on board they r half way there! The only thing that stopped mine was Steriods and the right main drug to put u into remission. Hope this has helped and gud luk to your friend xx

[35merlin]

Thankyou both. It is really helpful . Sasefc do you mind me asking how long roughly it took to clear your sinus infection with the antibiotics?

[sasefc]

I felt the difference in a few days which I was quite surprised at. I thought it would take longer.

[35merlin]

Oh ok. That's good it was quick. Did you just take the anti biotics on their own or with steroids?

[sasefc]

Doctor prescribed just antibiotics but I am still on 1mg of steroids a day anyway.

[35merlin in reply to sasefc]

Oh ok thanks

[Doghouse]

I was diagnosed with WG in Dec 2012 , mine started with a breast abcess but also had a headache which wouldn't go away with painkillers. I did keep telling the Dr's and nurses while in hospital with the abcess that I had got a sinus problem but they just gave me stronger pain killers. I informed my Gp when I got home and he prescribed an antibiotic unfortunately not strong enough. I was readmitted to hospital after 1 week as my condition deteriorated. I was then put under the care of a general surgeon as I had lesions on my spleen and pancreas , he requested a head scan straight away and confirmed sinusitis changed my antibiotics which kicked in within 24 hours. At this point I had not been diagnosed with WG and I was not on steroids. I did see an ENT consultant later on who was very good and lucky for me no damage to the inside of my nose.

[35merlin in reply to Doghouse]

Ok glad your nose wasn't damaged. Were the lesions to do with the WG then?

[Doghouse in reply to 35merlin]

Yes, but after treatment it's all cleared .

[35merlin in reply to Doghouse]

Oh ok well

glad it did.

[tara88]

I have GPA Wegeners and I had same problem at start of last year sinusis inflamed blood crusting in my nose blood from ears and just feeling constantly rotten for 6 months painkillers and antibiotics not touching the sides.I eventually had FESS operation of my nose to clear sinus they took a biospy and with blood test discovered I had Wegeners Granulomatosis. Steroids seem to help with blood crusting and nose pain although they are trying to lower my does down now. I do still get some sinus headache. My consultant says I will probably need some form of steroids and anti inflammatory drugs for the rest of my life.I don't mind if it stops my head swelling and feeling like it's been put through a vice. Hope you get sorted and get some treatment and a diagnosis. Keep on going to your GP it took me 7 months back and forth.

[35merlin]

Hi Tara, oh ok, yep my friend had an operation on his nose. Yes the steroids helped my friends nose but he was only on them for a few days then it got worse again. Have you been on steroids for your nose, ears for a while? Thanks.