Help with dry sore nostrils which often bleed.

[Gillyg]

I have SLE, SS and FIBROMYALGIA. A couple of years ago I started to get what I thought were nose infections. The nurse at the surgery said if she had not known better she would have thought I had been snorting coke. I had no skin up my nose it was completely raw(both nostrils). I was given some ointment to use Naseptin , I have repeatedly used this ointment ever since. My nostrils are always sore inside and often bleed. I try not to use it on a daily basis but it does help the pain when I do. I don't see the doctor about this, do you think I should ask to see a ENT doctor, I feel it has something to do with my SS. no one has confirmed this. Does anyone have advise. Thanks.

[nicky1234]

hi gillyg,

it sounds painful i would defo ask about the e.n.t peeps.

hope you get some answers xx

[Gillyg]

Thanks I do need to go got a couple of things I have Ben putting up with, but you know us Lupies don't like to go to the doctors. Always make you feel you are making a fuss over nothing. Cheers xx

[kittykat68]

hi gilly snap so do i , when gp looked 2 weeks ago he was like ummm ahhh yes well its definetly crusty up there, i only go to the doctors if a sympton last for 5 days and then basically they just confirm i have another sympton, ive only been diagnoised 3 years ago this month but like many of us have it it for 18 years, i luv this site even though i dont comment much it puts my mine at ease really strange i know but to hear other ppl with the same symptons make me feel not alone, wot works for one of us may not work for another but the little tips fellow sufferers give u is a great help,my boyfriend has offered to pay for a consultation at the lupus hospital @ london bridge THEY ACTUALLY SPECIALIZE IN LUPUS but im scared to go there in case they tell me i have more syndromes/phenomenons x

[loops1983 in reply to kittykat68]

Ditto your symptoms sound very much like mine. It's so embarrassing having to explain it and yes it's painful.

I also get ear infections frequently !

[Gillyg]

Bless you kittykat Even if they did like me they all just cross over and no one really knows what causes what. I think you could get in to St Thomas in London on the NHS you should try your rheumatologist shouldn't object. I used to go because they see so much more than the average hospital (Dorset have very few cases) they are good but it's a long wait. I stopped going because of the distance but regret it. It is helpful to know you are not alone and someone else understands. And just knowing someone else has a similar symptom makes you think you are not imagining it. Just wish we could show the Gp the letters people write maybe they wouldn't just expect us to put up with it. I have paid more than once and for accupuncture but we shouldn't have to but if we don't we tend to get left behind. Try and see st Thomas on NHS before you pay. Good luck and thanks for replying. Someone else has a nose problem. It helps. X

[daisyd]

Until you get your appointments, which you need to go to, Try a little Vaseline on a cotton bud and gently apply, tiny amount only.

I had a sore nose only bleed from one side I went to the ent department as had a small place cauterised. Gp referred me!

I always think when wondering if I should see a Gp. What would they do if their partner had the same symptoms.

I think they would be really annoyed if they were treated like you were

[Gillyg]

Thanks will try the Vaseline. Yes that is a good way of looking at it, they would be getting advice all the time. People with genuine illness don't go to doctors often its people who are infrequently ill that are there all the time. The trouble is they think we are ok and it's not the case we just look after things ourself. Have a good day. X

[Coppernob]

Just to confirm that I also get a terribly dry, crusty nose with my SS. Think it's pretty common. Weleda's Rhinodoron spray helps at night, I find. Also some people like Nozoil.

[Hidden]

My Gp gave me some antibacterial cream when I had acrusty nose. my ears were the same..it works. Fucidin cream on prescription.

[EOLHPC]

Yes, me too, years of dry crusty inside nose with bleeding cracks + pulp lesions outside nostril (EEK) due to SLE, sicca syndrome -suspected SS.

Ibecame resistant to naseptin, but gp replaced that with bactroban which is good too. The tiny bit of Vaseline on q tip woks for me too. ENT got me onto neilmed sinusrinse (you can get their products from amazon) which I think helps control bacteria levels deep in nose, and helps reduce bad bacteria which can make rawness in nose worse. I have to use Neil med sinusrinse daily when I have sinusitis bad, but otherwise just 1x per week.....it's a miracle: been doing this for just under a year now, and not had to use bactroban once......but this is 1day at a time, watch this space stuff for me!

Take care

[Gillyg]

Will get some nose wash. Xx

[Thaddeus]

I would have thought some salt water would help, either snorted and held for as long as poss or washed through the eyes. Also Hypromellose drops might help. Are your eyes dry?

[crissie45]

my lupus has flared alittle lately i have secondary sjogrens and i get really dry nose but no blood loss, I just put lubricating nose cream when really bad steam inhaling helps alittle but doesnt last long, I also get dry eyes eyes drops have helped, its very dry in australia at the moment prob why Im flaring plus alittle stressed as well.

[chrisj]

Hi Gillyg....I have dry skin problems including my nose. It got so bad that one nostril split slightly on the end of my nose, still have the scar, had no idea I had SLE then. Eventually I went to ENT and he prescribed Naseptin and a saline nose spray. The salt in the spray burned my nose after a few uses so I stopped that and used vaseline to help with the soreness. Later my daughter told me about an ointment called Diprobase which I bought. Its similar to vaseline but for me more effective, I'd recommend it its better than Naseptin and you can buy it over the counter, no prescription necessary

[Delila]

Hi I've had the same problem for years and now have a perforated septum! Have been to see an ENT specialist who also asked me if I took recreational drugs! I nearly fell off my chair but he was serious!!!! I also was given naseptin cream which does help when my nose is sore, I also find keeping it moist with a moisturising spray does help. I get worried my nose will eventually fall apart but fingers crossed so far it's just stayed the same. Was supposed to have annual appointments with ENT but they stopped sending me appointments!!!!

[Nightjar]

Hi Gilly, I too suffer with a bleedin' nose. Though it can't be as bad as yours, as I've never been accused of snorting 'stuff' ..how awful!! The only thing I 'snort' is Aloe Vera Gel - applied 2-3 times daily (more often when bad). I particularly use the gel on going to bed and find it a great help with any dryness - just about ..anywhere. Also - any symptoms get worse on days when I haven't had enough to drink ..filtered water that is! xxx

[Gillyg]

Thanks all for comments have made a note of things people have shared. My eyes are also very dry but have drops for them. Even so sometimes your eyes can feel very blurred when tired, It's my nose I feel concerned about it gets very uncomfortable. So many problems that people can't see. We deal well don't we let's have a pat on the back and continue the good work helping each other. Wishing you all well. X

[janann]

Naseptin cream is specifically for the nose so maybe worth asking your doc for it when you see him. I get similar symptoms but not as aggressive as yours. Hope this has helped. x

[Christamena]

Thanks for al the above information. I seem to have developed the same problems, dry painful nose and raw inside and all sorts of weird problems with my eyes following a bad virus last winter. I hate going to the doctors, they always make me feel as tough I'm making it up and never connect these symptoms to Lupus. Can dental problems be a trigger to the nose symptoms? I'm waiting for an extraction.

[marcusk]

Hi. Same problem here . 3 years of dried skin from split . Everyone thinking I am snorting cocain . peel that off and get a scab and people think a big booger . Well no one had a cure that I could find and their doctors were stumped . So while I was at the doc the other day I asked about it and he said it was an infection of some kind . Gave me a rx . Used it fgor two days nad split head up . Mupirocin ointment . 13 bucks on my rx discount card and probably cheaper on insurance . use a QTip and put a thin coat twice a day in nostrel .

Nice relief from this problem . Real tired of using tweezers to peel off dead skin every day.