Sore in the nose

[Willow7733]

So I finally went to see my doctor about the sore in my right nostril. He said it was infected. Gave me ten days of antibiotics. It will be finished tomorrow. Nothing has changed and the sore is still there. I don’t know what to think. Is this a lupus thing? (I am very new to the diagnosis. Should I be telling my rheumatologist about this??)

[svfarmer]

Hi willow I suffer really badly with sores up my nose and yes it is a lupus thing - I can have them for up to 6 weeks at a time then they go for few weeks then they come back again - so painful arnt they xx

[Willow7733 in reply to svfarmer]

It is painful! I don’t know what will happen now that I did a couple of days on antibiotics and still have the sore. I have had it for three months now.

[Ingrid1234]

Yes, some lupus sufferers can get nose and mouth ulcers.

I often get internal nose swellings and use soothing, antiseptic cream (eg Savlon)which I put up each nostril to prevent infection. Often itchy.

Unfortunately I also suffer a runny nose as a side effect from Ramipril and often have to blow my nose with tissues. Can’t win.😢

[Quiettwerp in reply to Ingrid1234]

Thanks.

[CSLO]

I'm sorry you're struggling Willow.

I get them too and they can be eye-wateringly painful. Oral ABs don't work for me and now I'm prescribed Mupirocin 2% which does the trick every time. This of course may be what you were given! Within hours of the first application they just feel easier and then start to heal and disappear quite quickly.

Lucikly for me they come maybe just once or twice a year and my rheumy has instructed my GP to prescribe the Mupirocin as and when needed though the GP was always happy to do so.

Yes, as svfarmer says, it can be a Lupus thingy!

[Hidden]

I don’t have lupus but Stills which is AI and I get nose and ear sores. I treat them with antiseptic cream as GP appears’Closed until further notice’. I also suffer from Interstitial Cystitis and Lichen Sclerosis both associated AI conditions without cure apparently so I have to self manage which is horrid as usually if my RA flares these conditions do too. If you find a cure let me know 😉merry Christmas 🎄

[Ingrid1234 in reply to Hidden]

Hi Hidden ,

Very sorry to hear this.

Like me you’ve more or less got a permanently “locked down “ GP?

Self-management can be so tiring.😢

I certainly agree that the antiseptic, healing cream is a good idea and certainly helps by possibly disinfecting the air breathed in with so much omicron about.

Best wishes.

[Hidden in reply to Ingrid1234]

Wishing you a merry Christmas and happy new year 🥳

[lottagelady]

Not sure if it's a Lupus thing but it's definitely a Sjogrens Syndrome thing - I would go down that route as that's how a friend of mine of mine was diagnosed! Your teeth starting to disintegrate, fillings dropping out, crowns not staying on at all?? If so then it could be that. Your bloods may not show it as it can take 10 years to show up, but you can be sero-negative Sjogrens which I am and diagnosed with a positive lip biopsy (but that also took 8 years to show up with me ....) xx

[chrisj in reply to lottagelady]

I agree, thats my problem. Mine was diagnosed from a biopsy just inside my bottom lip x

[Kath1]

I was eventually given antivirals (acyclovir) for the sores in my nose and my rheumatologist recommended asking the gp for an "emergency box" to keep at home for when they come back. They work well. I know how irritating the sores are so I hope they clear up for you soon.

[CecilyParsley]

Hi Willow I have had a large sore blocking my left nostril for most of this year. It scabs over and then bleeds. I have to admit here I am not a nose picker but I just cannot breathe through my nostril. My GP told me to do nasal ablation ( snorting warm water salt and bicarbonate) after that I bled heavily for 8 days. I had it cauterised 3 times and the ENT registrar said it was Bechets. I have had antibiotics, nasal sprays etc but the damned thing is still there. Tell your Rheumatologist lovely. Big hugs and Merry Christmas 🎄🎁xxx

[Willow7733 in reply to CecilyParsley]

That sounds like what I am going through! It crusts so bad, it blocks my nose. I notice it gets worse when I get sores in my mouth and feel run down. I don’t know how to bring up the subject with my rheumatologist. So far I only have phone appointments and he is not a talker. It is so awkward. And really only lasts 2 minutes. I am so tired I am starting to not even care anymore. I don’t have the energy for these quick and impersonal appointments.

[chrisj in reply to CecilyParsley]

Try Sterimar sprays. They're gentle and moisturise at the same time.

[Pumpkin2009]

Willow, I have had them too and do think they are from lupus. My nose also swelled on the outside. My previous rheumatologist ( who unfortunately relocated and I liked her so much) said lupus. Let your rheumatologist know. I did take pictures which was kind of hard, but in case they disappear, you can show them. She appreciated any pictures and put them in my file. My new rheumatologist is lets say, not her. Merry Christmas.

Healing hugs.

[Hidden]

Hi Willow I have had nose bleeds from nasal blood clots for about 6 years,originally treated with naseptin when GPs did not consider a cause ie linked to my other conditions.I saw an ENT consultant several years ago who cauterised my nose but this had no effect.6 years on I got to see another ENT consultant whose only advice was to "put vaseline up my nose".I asked for a second opinion and had surgery but still wake every morning with blood clots even though treated in the day time with nasal rinse and vaseline.My nose is also swollen on each side as well as bone growth and bone pain and I have bruising across the bridge of my nose -again had this for ten years and no cause considered.i also get recurring mouth ulcers under my tongue,have been told my facial rash is that of lupus .GP confirmed I had most of the pointers of Lupus but wont make a diagnosis.Have seen two rheumatologists but neither asked about my symptoms.The second one has not responded to my email re test results he never informed me of.An endocrinologist confirmed that there were changes to my facial features and these are clearly evident by comparing photos "before and after 2011" when symptoms began.gp confirmed that blood tests are non conclusive but is now saying "blood tests are normal" so you dont have Lupus ,also disregarding that another GP Diagnosed my facial rash as that of lupus.He wont accept that people can be sero negative LUPUS.am at my wits end and concerned that my head has changed shape and he has not taken this seriously.

[chrisj]

Hi Willow, Lupus is in remission but I have Sjogrens and my nose is almost always dry. One side was extremely sore and just wouldn't clear up. I was eventually prescribed Naseptin by one of our gps which is an antibiotic cream and that did the trick. The soreness did clear up in that side.

When I rang for more cream I was told to use Vaseline 🥴 I explained to the receptionist that I've been using it for months and months and that although it made things comfortable the soreness kept coming back. She reported that to the doctor and he agreed to prescribe Naseptin as long as I "used it sparingly at night".

I once spoke to a doctor in renal (thinking he was from rheumatology 😣) about the soreness and he explained that it was coming from the dryness in my nose which was a breeding ground for infection. I learned more from him than anyone else in the profession. So I would recommend Naseptin xxx

[mimiof9]

Hi Willow! Sores in the nose are the devils work. I had a chronic sore for a long time in the most inconspicuous place. The inside tip of my nose where nothing can reach it. Wearing a mask on top of Lupus is likely the reason it was coming and going for many months. I swabbed it with Campho Phenique. That was soothing. The nose to mouth ratio on ulcers for me is fairly even. The ones I get in my mouth are always strategically placed where my toothbrush hits it. Oh mama does that hurt!

Sorry you're dealing with this.

[Jacko37]

Hi, I've had really painful sores in my nose for years and years, they are really painful, even hurts to breathe. Doctors don't take any notice, the only thing that helps a bit is Naceptin nasal cream, I put it on with a cotton wool bud. Think that it is very common with Lupus (though my diagnosis is Scleroderma, take care and have a lovely Xmas,vXx

[Alida_Bennett Partner LUPUS UK]

Hi Willow7733

The short answer is “yes” – you should tell your rheumatologist about this – as a rule of thumb, it is a good idea to tell your rheumatologist about all new or ongoing symptoms as lupus can manifest in many different ways. Please see our publication regarding the nose and mouth here:

lupusuk.org.uk/wp-content/u...

There is also a blog post which you may find useful here:

lupusuk.org.uk/coping-with-...

I hope you find the above helpful, but I would suggest that if the antibiotics have not cleared the sore, then a return visit to the GP will be needed.

You mentioned that you are new to the diagnosis. We offer a free information pack which you may find helpful and which you can download or request at:

lupusuk.org.uk/request-info...

I hope that the above answers some questions for you, but if I can help further, do please let me know.

Kind regards

Alida

[Mogcat]

Hi have just been reading your post and the replies. I have RA, lupus and sjogens syndrome. I have always have issues with sores up my nose but no-one has ever told me that it is caused by lupus. I have only joined this forum tonight so am finding it very useful already . Many thanks everyone x

[MusicalFurbaby]

Hi Willow, sorry to hear the antibiotics aren’t working. Recurrent mouth and nose ulcers are one of the 11 diagnostic criteria for lupus, so yes, they are definitely relevant to tell your rheumy! They may want to check if you are experiencing systemic inflammation that could be affecting your nose.

I get recurrent mouth and nose ulcers. Dr Google says they are usually painless - but not in my experience!