Nose sores?: I have yet to get a rheum to diagnose... - LUPUS UK

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Nose sores?

jillmd profile image
8 Replies

I have yet to get a rheum to diagnose me but all the writing AND symptoms are on the wall and "lupus"is thrown around by all my other doctors. I have 9 joints affected but all soft tissue damage and degeneration. When I am off plaquenil and ldn I get the rash on my face. I go through periods of flare where the pain is intense in all areas to the point I can barely walk or bend to even put my underware on. Now I keep getting sores inside my nostrils. I keep seeing nose and mouth sores listed but never what type so wondering if that's what it is.. just feels almost like I scratched my nose picking it but of course I Cant see into the upper areas of my own nose and I'm not picking my nose except trying to figure out why it hurts so bad, sometimes there's blood and I assume the hard part I'm feeling is a scab.. I never had these before but they tend to last a couple weeks at a time and has been going on for almost a year now.. where the joint pain and inflammation has been about 4 years.

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jillmd
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8 Replies
weathervane profile image
weathervane

Hi. I have sjogren and was having alot of nasal probelms - inside of nose felt raw and blocked. I have been using saline nasal spray at least twice a day now for 6 mths and problems much improved as helps to moist nose and saline helps with healing sores . I hope this might help🌸

Barnclown profile image
Barnclown

My version of this is simlar to weathervanes....I especially rely on neilmed sinus rinses, gels, sprays etc, thanks to my NHS ENT consultant recommending neilmed products.

I'm especially vulnerable to infection, so am prescribed topical nasal antibiotics: bactroban & Naseptin (I'm now resistant to one). My feeling is that 5 years using neilmed products daily has meant less of my nasal lesions becoming infected 👏👏👏👏.

weathervane profile image
weathervane in reply to Barnclown

I have mentioned these probelms to my GP ( nasal probs ,have had help with mouth) and have had no help. My sister suggested the saline rinse and had help with sores and sinus issues . Have also found that streaming with T tree oil helped with sinus as well. I think the nasal probs do get ignored!

Barnclown profile image
Barnclown in reply to weathervane

👍👍👍👍, & I agree!

e.g. had my GPs bothered to look a bit harder at my LOOOOONG repeat prescrips list during the 30+ years it took them to realise it was v likely I a systemic immune dysfunction condition....😉 they might JUST have woken up a bit earlier: e.g. chronic lesions/boils/ulcers/infections/inflammations in nose, ears, mouth, eyes, vulva are classic signs of lupus & sjogrens...instead my GPs bumbled along for decades dolling out the meds prescribed by them + consultants at various hospital clinics...basically ignoring the wood for the trees.....i.e. the cumulative multisystem damage all this chronic inflammation was causing....oh well, am only feeling this bitter today cause it's a really hot😏 ...after all, NOW at 62 my lupus meds are helping me mostly feel better than i have since my 20s!

🍀🍀🍀🍀 coco

weathervane profile image
weathervane

Some times you excuse gps as you may not always see the same one and they are not specialists in these areas. Its is hard to excuse consultants who are ment to be specialists who ignore all the tests and probably dont take the time to read their patients historywhen things are staring them in the face. --- however it is good to get a definite diagnoses finally even if it has taken years. I hope you continue to feel well 😀😀

jillmd profile image
jillmd

the only diagnosos they will give is undifferentiated connective tissue disease. I have had a high pos. ANA several times but no other supporting labs come up positive and I have at least 3 or 4 other autoimmune diseases. Of the 11 symptoms used to diagnose I have 6 I think.. I'm hesitant to go on steroids as my adrenals are under attack as it is and it's only a matter of time before I am steroid dependent anyways..

but I really wanted to try to confirm these sores in my nose are the typical ones associated with lupus as that checks off another symptom towards diagnosis

shareasmile profile image
shareasmile

Jillmd,

It sounds like I am in the same boat as you. I have been formally diagnosed with sero(-) RA, but my latest ANA test has come back a strong positive at 1:640, which is more suggestive of a different AI disease including lupus.

I have had nasal sores occur for several years, but have always thought they were cold sores. Now I think they are yet another sign of lupus. My sores are often painful, but not always. Sometimes I just feel the scab. They last about 2 weeks. The more I research and ask questions here, the more everything is starting to fit together.

Too bad our docs can't spend as much time on us as we can!

My next rheumy appt isn't until October, but when I go, he better be ready! I have a boatload of stuff to share in the 15 or 20 minutes of time I get with him!

Chlsbug profile image
Chlsbug

NASAL SORES!! My doc just told me I have I have staph induced "impetigo" causing these nasal sores which I get inside and outside my nostrils. At times they go as far up where I can feel pressure inside next to where my eye is located.

The inside sores start off as what a deep set pimple feels like, then eventually comes to a "head" but turns into an extremely painful blistering disaster... this makes sense that it's impetigo I suppose because as my doc explained, we all have these bacteria on our bodies daily, but people with autoimmune diseases/disorders (such as SLE...) may become very ill without knowing that's the cause of the sores because we've "blown our nose a little too hard which caused an opening of sorts for the staph germs to make way into our body then and all hell breaks loose!!" Total made sense.

I've been applying a antibiotic ointment to the sores inside and out twice a day, she has also kindly enough given me a prescription for a lotion which keeps some bacteria counts down, because anytime I have to go to the doctor office I wind up sicker than sick and just miserable always!

Hope this helps some of you in the long run, maybe mentioning it to your doctor would or could help? Good luck everyone!!

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