Can i ask if anyone else has problems with their nose. Inside I always have cuts or coldsores and now it seems to be bleeding from the sides of my nasal septum. The oil heating in my house seems to make it worse and i feel i can't breathe.
Any advice would be welcome folks.
I have Wegners (GPA) and had a lot of nasal crusting and bleeding early after diagnosis and still have a little 6 years later. I did end up losing most of my septum but that doesn't happen to everybody. Normally bleeding like you describe could mean your disease is active at the moment so you may need extra treatment. I would advise seeing an ENT consultant if you can. What treatment are you on now? In the meantime I would suggest nasal douching/ sinus rinse to help keep the tissues inside clean, you can get kits from most pharmacies including boots. Hope this helps.
Best wishes
Lisa
This is a massive help to me. I've had HUV for almost 20 years but have never had this problem before. I'll ask ENT to review me and pay my chemist a visit tomorrow. I've been on steroids for as long as i've been ill plus anti-rejection meds as i lost my kidneys to HUV so i just had my second kidney transplant in April past. Thank you again for the reply.xx
I have WG, which has caused a hole in my nose. I'm not in remission yet and I've only had 4 infusions of cyclophosphamide so far. I still get some crusting and bleeding, but I keep my nose cleaned with twice daily saline washes, which soften any crusting. I just make up my own salt solution and use a small plastic syringe.
I have UV and also have cold sores?@ small cuts inside my nose which crust over, I recently saw Dr Jonny , ENT consultant at Adenbrookes due to my UV, and asked what was the best thing to do about it, answer ;if the cuts crust over it is probably an infection that would need an antibiotic cream or if it was a dry nose use vasaline,He also suggested as did " suffolk girl" and Lisa, that washing your nose out was helpfull, he suggested that Sterimar that can be purchased ready mixed ready to use although does the job ,is expensive as once the can is empty you need to buy another one. the suggested option was to purchase a nasal wash kit that once the provided salt sachets were used up you could then make up your own wash, and so saving buying more, I found that these sinus nasal washes bought from Boots etc, were around £16, but buy the same kit from Amazon £9.99, free postage. I,ve found this extremely helpfull also helpfull for any sinus problems. Hope this is of some help. if you need any other details , let me know and I will help if I can.
I also see Dr Johnny, but he's not mentioned Sterimar. I do use Bactroban ointment, on his recommendation, twice a day, 2 weeks on and 2 weeks off, to ward off infection.
Hi Roisin.
As you know I also have HUV. I had some problems with nose bleeds earlier this year that required hospital stays and cauterisation to sort out. As I'm in a good remission the ENT doctors were cautious about naming the vasculitis as the cause but since I've never had any problems like this before I'm suspicious that the HUV had caused damage to the vessels in my nose when it was active.
But as the others have said, nasal problems like you describe are more common with WG and certainly might be an indication that your disease is more active than it should be. I'd definitely get things checked out by ENT but also perhaps ask for a review with your main consultant (I assume you're under a nephrologist given your kidney involvement). It might be worth getting your bloods checked for the usual inflammation and complement markers that can indicate disease activity.
All the best and let us know how you get on.
Richard.
Oh and since my internet access is a bit dodgy at the moment, I hope this gets through... Thanks to Pat for the heads up.
Thank you everyone for your help. I've been completely run down with the start of yet another attack. I'm back at the hospital on Tuesday so will speak to my dr there about this problem and a few others. Thank you again.
NIGHT SNIFFLES
Ever since I was a child I have suffered from various ear nose and throat problems, with a mastoid at 5, and tonsils removed, and phlegm and blocked nasal passages, and even major problems upon descent into an airport with sinus pain in the fore head, most of these can be dealt with the use of an inhaler. However I have found at night over the last few years that it is a problem and I had wondered why I was having such a dry mouth at night, but it is obvious that if your nose becomes blocked and you breathe through your mouth then obviously your mouth will become very dry. This had never occurred to me before, but a couple of months ago, there was a news item suggesting that if people took a daily dose of Vitamin D, then they would be less likely to get colds etc. A news release on the 16/2/17 explains it all.
telegraph.co.uk/science/201...
I decided this was a case of “nothing ventured, nothing gained” so bought a bottle from Costco, costco.co.uk/view/p/kirklan...
Within a couple of weeks, I suddenly found that I was no longer having a dry mouth during the night, and further, that my nasal passages remained clear throughout the night, this is a vast improvement over what I was having previously. It could only be working as a result of taking the Vitamin D as nothing else, either in my environment or diet had changed.
Granulomatosis with polyangiitis and nose bleeds
More problems with prednisolone tapering
Nasal polops with EGPA
Problems with Cyclophosphamide
GPA vasculitus with nose pain 
