Nasal sores - what are the lupus nasal sores like? I have developed a large sore/blister on the outside of my nose. It is very painful. I ha

[Wendy39]

Have had one on the inside of my nose for months and that one was just healing. So, what with being on my 6th month of meds (Hydroxychloroquine 200mg, twice a day) I thought yes, the meds are working and making a difference to all the little things and big things. But now i have this new super big one to contend with. Do people get nasal sores with lupus on the inside or outside of their noses? I am also wondering if, I went out at the weekend and although I had applied my facial 50+ factor cream, whether I had rubbed it off my nose, with a tissue, due to having a permanently runny nose and the sore is actually a reaction to the sun? Again, like my post on sore throat, my GP doesn't seem to know. My previous GP has left my surgery and she was a skin expert and seemed genuinely interested in my onset of lupus etc, so I am seriously thinking that I need to follow her to her new surgery. But in the meantime, can you lovely people help me? Thank you!

[joannebond360]

I get terrible nasal sores and also get them in my ears too. They are so so painful. I get them towards the outside of my nose, always have a constant runny nose too. I am on mycophenolate mofetil, hydroxy and prednisilone and although I am feeling so much better in a lot of ways I still get the sores and my skin is still having lots of break outs.

Jo x

[kessel_11 in reply to joannebond360]

You have described me.. any results?

[Butterfly_Warrior in reply to joannebond360]

How do u deal with the sores. I've got one in my ear and a few in my nose at the moment and theyou are awfully painful. The one in my ear itches and hurts so I scratch it carefully but ithe often gets scratched open accidentally and then it bleeds. Same with my nose. The one(s) in my ear(s) I usually have to put some kind of Vaseline in my ear(s) to make it not hurt as bad but then it's still itchy and painful but tolerable. Idk what to do. I get one in my right ear the most probably every few weeks and it lasts for days. My left ear rarely gets them and both sides of my nose get them probably every 2-3 weeks. It drives me insane cuz they itch and I pick at them and it looKS like I'm picking my nose.

[Wendy39 in reply to Butterfly_Warrior]

Hello. Sorry to hear you are having problems with nasal sores and ear sores. So difficult dealing with all the niggling symptoms. Luckily, I appear to have continued to improve as time has gone on and I am getting these sores a lot less than before. unfortunately I never found a miracle for these. Your Vaseline is probably as good as any. I use coconut oil on my skin as a moisturiser and aloe Vera. I try to avoid steroid creams as much as possible. Good luck. I have biopsies booked for next week to hopefully finally find out more about the sores on my hands and head. It's never ending. Best wishes.

[Butterfly_Warrior in reply to joannebond360]

Also feels like my ears are running like there'should moisture in them but when I scratch themy there's nothing

[Muskin in reply to joannebond360]

How did you c]ear it up

[Wendy39 in reply to Muskin]

Hello. My skin issues are only truly under control when my disease activity is under control. I wrote this post sometime ago. My biopsy of the skin rash at the nape of my neck showed active lupus disease and I am now on 3g of MMF plus 400mg of hydroxychloroquine. Most of the symptoms are under control but still get flares. I have to be extremely careful in the sun too. I am very photosensitive with SCLE and protecting myself is very important in controlling my disease activity too. Do you have nasal sores now? What's your diagnosis? Wendy

[anbuma]

hi wendy I have had lupus nasal sores fro two years ,was treated with various sprays and creams which only gave temporary relief and then asked for a referral to ENT.when got appointment and saw consultant he examined me but provided no other treatment after telling him my history.then all it said in the letter to my GP was "its not sinuses".so angry as that was not the problem and no one had mentioned sinuses.still have the same now tho it is one big sore inside my nose which bleeds all the time..i also have "bone growth" on each side which is sore.so far gp wont acknowledge it again.

[Hidden]

I get sores or scabs inside my nostrils and they cause my nose to bleed often if I blow it or spontaneously. I don't have a diagnosis of Lupus but I do have RA. It was these nasal sores that first brought me here actually as when I googled this unpleasant symptom Lupus came straight up.

The first sores were around the outer edges of my nostril and looked and felt like a boil. Then I realised that although my nose was bright red and painful by the nostril the sore was actually within. Now they are high up inside my nose I think and I only know they are sores because when I blow my nose of a morning the blood flows! And I wake up feeling very congested with nasty crusts of blood around my nostrils often.

I use Naseptin that my GP prescribed and its very good although I hate applying it! Mine are the result of having a very dry nose not a runny one.

[Wildcats85 in reply to Hidden]

I am new to the site and you sound just like me. I have a rare for of arthritis that is in the RA family. They have tested for about 8 yrs for Lupus and I have so many symptoms and no I have even more, including nasal sore inside my nose at the very end and it hurts because it cracks and bleeds. I also have been getting more rashes on my skin and sometimes my whole nose turns red and my checks. My job is very stressful and don't know if that is bring out the symptom's now or what. My whole life has been extremely stressful over the last 3 yrs when I lost my only brother, got divorced after 22 yrs, and had to move out of my home and leave my kids there as their main home. I have had all kinds of strange symptoms with my heart and lungs also. My leg muscles are so weak too. I don't know what to do or if there is even choices. Please help me I am so desperate. I don't even want to live anymore.

[Hidden in reply to Wildcats85]

Wildcat welcome to HealthUnlocked - I'm so sorry this sounds like a terrible state of affairs for you. But there is always hope that things will improve though - so please don't despair.

However this is a very old post - please do post on the main Lupus UK or NRAS communities by clicking on "write a post" (above in green with a pencil) or no one but me will be able to see it and respond.

In the end it turned out that I didn't have RA - I have Sjögren's with probable Scleroderma. There are other diseases, including various forms of Vasculitis, which can make us very unwell apart from Lupus. You should join two other HealthUnlockec communities - NRAS and Vasculitis UK and post the same post on each community and you will get loads of helpful answers and support I'm sure. Take care, Twitchy xx

[Wendy39 in reply to Wildcats85]

Hello Wildcats85. I'm sorry to read your post and see how much you are suffering right now. This was my post from 3 years ago but weirdly, I have nasal sores again right now! Diagnosis of lupus is a tricky business. The average diagnosis is 7 years but some people take much much longer. I have read Twitchytoes reply and she is right - put up a new post of your own. This is a great support site for so many of us - it has been my life saver since diagnosis, 3.5 years ago. Looking back I had lupus from Jan 2008 when I had my third child (and warning signs for most of my life now with hindsight and knowledge) and got my diagnosis when she was nearly 6 years old. In fact my husband worked it out and I went to the doctor and said my husband says I have lupus. Luckily the GP at the time specialised in skin issue and agreed - and my blood tests backed it up - positive ANA. But if my husband hadn't worked it out who knows where I'd be now! I had lost 3 members of my family in 2013 as well - so i can say for sure that stress plays a huge part! My lupus journey continues and yours will too. Let us help you make it a more positive one. So put up a post, give us some more details, all of your symptoms, your blood test results, any meds you take, what area you are in, do you see a dermy or a rheumatologist? etc etc. Give us as much as possible and we will all try to give more help. People here are amazing and want to help others so much. Don't give up!!! I'll look out for your post. Wendy

[Belinda7 in reply to Wildcats85]

Stress is what sets off my Lupus! Take you life back and try to be Stressfree. I had RA, Fibromyalgia and the heart and lung is the stress sometimes from panic attacks and Lupus. I will be praying for you. My doctor had me to fully retired and Disability because of all theses issue and more. After about 2 years I have it all under control and even on my bad days Life is a Blessing. Don't give up!! Fight for your Life and the take the Gift of Life and Share and help someone else.

[shelleykostner in reply to Hidden]

Yip I feel for u I have the same...did u get a diagosis yet? Or and good meds or creams that work?

[Wendy39 in reply to shelleykostner]

Hello. My post is 4 years old now. I've gone from a mis-diagnosis of SCLE to the correct diagnosis now of SLE. I am on 3G a day of MMF and 400mg of Hydroxychloroquine plus 3 times weekly of mepacrine. Now my lupus is about as stable as it's going to be, I don't get nasal sores any more. Fingers crossed it continues this way. I hope you find a treatment for your nasal sores. Best wishes. Wendy

[SmilingToots]

Hi

I was diagnosed 4 yrs ago with SLE Lupus however started getting these nasal sores about 10 years ago and no doc knew what they were back then. Initially given horrid steriod cream which I quickly discovered only served to thin the skin! I get them not just when been in the sun. If I have a cold or just sweating alot so getting a runny nose, the end of my nose swells and I get scabby inside and out. It used to be that my skin there would crack, look like a dry river bed and then flake however now it quickly goes away with minimum ugliness when I put honey on it. I guess it helps kill any bacteria or something. Sounds silly but it works for me however my bulldog then loves trying to lick my nose! I also apply honey with success to little lumps/sores on hands.

Maybe worth a try?

Good luck

[Whathappned in reply to SmilingToots]

I love how helpful our dogs are. Sounds like something to remember. I never thought to use it on that type of area. I know there are a few honey dressings used with infected/colonised wounds

[tashi]

I get nasal sores just inside nostrils, when scabs get too dry that's when they bleed, also given Naseptin from GP which does help, but they keep coming back. I get nosebleeds caused by something else, you can tell the difference easily. SLE meds change periodically as now can't take mepacrine or aza as caused problems. Take hydroxy & pred along with various other stuff atm

[Kedaco]

I have had a sore up my nose for years now almost went but came back every time I get a flare-up. I get blocked up with loads of gunk, constantly trying to clear it, in the morning when I wake up my mouth is so dry from mouth breathing because of my nose being block, and when I blow it I have to be really careful as it will bleed. I have been given some cream by my doc but didn't help much I find flushing with fresh water help a bit but not for long.

[joannebond360]

I have found such releif from nasal dryness by using the neilmed sinus wash, has been a godsend! Use it daily and it's helped so much.

Jo

[Catlady56]

I get nasal sores inside nostrils, usually on the edges. My nose either runs like a tap all day, or blocks up at night. I get sores in corner of mouth sometimes. Often get mouth ulcers. Sometimes get sores on scalp. All depends how stressed I am at the time.

[Philly in reply to Catlady56]

Me too

[jillmd in reply to Catlady56]

This is the first Ive come across a connection of scalp sores to Lupus. Ive been trying to figure out what causes them for several years. The sores inside my nose started in last few months but wasn't sure if was connected to cold weather and dry heater air

[daisyd]

I have nose bleeds regularly always from the rt side of my nostril it is sore inside and the area becomes dry, I use a tiny amount of Vaseline on a cotton wool bud which helps

[Terry120 in reply to daisyd]

Unfortunately it's not safe to use vaseline or any petroleum jelly in the nose. There's something called "lipid pneumonia" that can develop over time when very small bits of vaseline are inhaled into the lungs. Something like Ponaris (or any nasal emollient) is likely to be safer.

[grannyjogger]

I have a permanently runny nose but am never sure whether this is to do with my autoimmune condition or hay fever (or a bit of both). Although it seems contradictory when my nose runs a lot, I also have very dry mucus membrane inside my nose, sinus problems and sometimes the inside of my nose is just sore. A few months ago the soreness developed into a swelling until the end of my nose was large, red and bulbous. I took a picture of it, as well as the butterfly rash that appears on my face (fairly mild), and showed them to my rheumy at my last appointment. She has now written to my GP and I've been referred to a dermatologist. I also get mouth ulcers but they aren't too bad. Like daisyd I use Vaseline on a cotton bud.

[miseryislupus]

I had one.it seems like it was on the outside. Or within the nasal tissue.it also seemed like a "boil". Not a blister, for me.

.

I also learned that a lupus patient on plaquinil is considered to have a severe

Case of lupus. Very confusing since my rhemy had said "mild or "stable" lupus . It really is a cruel mystery.

[Wendy39]

Thank you everyone for taking the time to reply to me. Sometimes I feel very alone and that no one understands me. But this site makes me realise I am not alone. Miseryislupus - I don't really understand how lupus is labelled. Mine is mild apparently. Plus even though I have all lupus symptoms, but luckily no internal organ involvement, mine is diagnosed as discoid lupus. But I definitely don't get just skin problems! Hey ho. I guess there will always be surprises and things to learn about life with lupus.

[GEISHAGAL]

You could be having a reaction from medication. I had the same problem when I was taking g Flexiril. Was told it was an allergic reaction, once I stopped taking it, it went away,hope this helps you.

[SmilingToots]

I get inside and out. On the outside the tip of my nose turns a perfect red circle and gets hot. If I blow my nose a lot it scabs up and then when dries up looks like a dry river bed..... Lovely! I don't put steroid creams on it any longer as it didn't help so now I put pure honey on it and it clears up quicker. I put honey on all hand, tongue and nose ulcers. I always have a slight bit of red skin on the side which I believe is the steroid cream damaging it. Honey warning ..... I have a bulldog which loves my honeyed nose!!