Sore nose

[SamTheTurtle]

Does anyone diagnosed with Sjogrens have issues with a sore nose? Not from blowing your nose too much, or as far as I know, from nasal dryness. The fleshy part of my nostril is sore and sometimes swollen. It is not always sore. My rheumy's assistant didn't seem to think too much of it after I told her that it seemed to go away after taking an antihistamine. (That does not seem to be working now).

[weathervane]

I have had similar problems, i use a saline nasal spray , sterimar, and it has made a big difference . I have found it helps to cleanse the nose and keep it moist , i use it at least twice a day . Its salt water with no additives. For me i have also found it helps with sinus problems as well, best wishes x

[SamTheTurtle in reply to weathervane]

Thanks, :). I'll be checking out saline nasal sprays!

[Beverly]

I use a nasal spray called Fess it helps with the dryness.

[SamTheTurtle in reply to Beverly]

So the fleshy part of your nose is sore and swollen due to nasal dryness?

[EyeandDry]

I’ve found antihistamines cause more dryness, especially in my nose to the point of it becoming quite painful especially in the sinuses. Antihistamines make my eyes a lot drier too. I avoid them at all costs, they seem counter intuitive to us Sjoggies!

[SamTheTurtle in reply to EyeandDry]

OK... Thanks! Catch-22 for me. I usually use them daily because of sinus issues. I'll be trying the saline rinses soon. Thanks muchly for replying.

[EyeandDry in reply to SamTheTurtle]

I found this on the Sjogrens.org site which may help -

sjogrens.org/files/sinusinf...

[Sekka in reply to EyeandDry]

Agree! 😊

[Catpuss66]

I have just bought neilmed nasogel ( saline with aloe Vera in a finespray) which seems to help. If very sore use paw paw gel very soothing if a bit gunky, heals sores quickly

[SamTheTurtle in reply to Catpuss66]

Thanks muchly! The flesh on my nose is swollen and has no sores. It kind of feels like deep-seated acne but there is no obvious appearance of any swollen glands, and no 'hard' feeling to it, thank God! Just thought I would clarify. I used antihistamines for sinus congestion and for overly-long reactions to bug bites (2 weeks or more). What does everyone use for sinus congestion and/or allergic(?) reactions to bug bites?

Thanks

[Sekka in reply to SamTheTurtle]

Serious bug bites do need antihistamines but I use cold sore cream applied with a cotton bud into nostrils when needed for dryness to avoid sores (which has happened) Good luck!

[SamTheTurtle in reply to Sekka]

Thanks Sekka! Some of the herbs/vites that I use are at least minimally anti-histamine. I stopped pretty much everything tho'. Thyroid numbers - tsh were low on 1 blood test and I wanted to make sure that it was not because of something that I was taking (herb or vite or combination). I will be starting back up with the herbs/vites and see how things go. So, yes, for now I will be taking anti-histamines probably daily. It's bug feasting season up here in Canada and I do not like using deet products, so it is inevitable for the time being that I will have reactions to the pesty bug bites. Some of the herbs/vites that I use are anti-inflammatory, so I'll see how those work with the nose thing. This swollen nose thing is relatively new for me, so I'll play it by ear. Thanks everyone for your suggestions.

[Hidden]

I have exactly the same problem you describe. For me sinus rinses cause nose bleeds and don’t seem to help much. I’ve seen several ENTs and was given naseptin for sores. Like you I take antihistamine daily and it may well make things dryer but if I don’t then I get allergic rhinitis and other skin related problems. I think allergies probably account for as many of my problems as Sjögren’s but it’s hard to know or strike a balance. My nose is increasingly pimply and red and again I don’t know if this is rosacea (told I don’t have this though) or other - I will ask the dermatologist when I see her again next month as I have little red spots around my face - especially during the winter months. The tissue inside and on my nose often feels swollen and sore.

[SamTheTurtle in reply to Hidden]

Thanks Twitchytoes! I do not have the pimply effect and I also do not have open wounds within my nostrils. This is definitely swollen flesh surrounding what, closest explanation I can come up with, is like a swollen gland. Oddly enough, based on recommendations from others on this site, I stopped the antihistamines for a few days and the swelling has subsided. In the recent past, taking antihistamines made the swelling go down. I have somewhat of a quandary, tho'. I live in Northern Ontario, Canada, in the country and my reactions to the 'bites' from bugs - mosquitoes, black-flies, wood ticks and later in the summer, no-see-ums can last 2 weeks or so, which is part of the reason I was taking antihistamines. Any other recommendations?

[Hidden in reply to SamTheTurtle]

Well I might have used exaggerating description of mine as there are no actual visible clues to my nasal issues apart from a mildly sunburnt looking nose. The pimples are tiny and hard - not like rosacea pics and the overall effect is of swelling tissue inside and out, nothing apart from broken capillaries inside most of the time - which I’m told is dryness. Have you tidied humidity ie room humidifier yet? You could try inhaling with drops of tea tree if the swollen skin might be a localised infection?

Could this be some kind of small vessel vasculitis for both of us perhaps?

No other ideas sorry - but I enjoyed reading your account of the insect life of northern Ontario at least.

[SamTheTurtle in reply to Hidden]

Thanks Twitchytoes... Small vessel vasculitis, hmmmm, no diagnosis of that yet. (With all due respect, I hope that is not what it is). My rheumy seems not too interested in the 'small' stuff, like skin dryness, recommended glaxal base as moisturizer, slight dryness of nose, eyes and mouth - recommended topical treatments, tiredness to the point of exhaustion - '...we could monitor your sleep...' - did not follow up with that, swelling of fleshy part of nose, nada, occasional swelling of glands, no real issue until it is ongoing for months (?) I guess because I am alive and kicking with no systemic issues, life must be grand, so live with the rest of it. I know there is not much they can do. Rheumies in Australia seem much more involved with their clients tho'. I am getting quarterly blood tests to monitor things like complements (so far so good) and pre-diabetes, etc. They want to pass that off to a nurse practitioner near my community. I am not pleased with that.

[Hidden in reply to SamTheTurtle]

I’m in Scotland and fare similarly - although I do have high inflammation and previous diagnosis of RA - very MS-like symptoms but nevertheless am also soon to be discharged saying “just Sjögren’s and hypothyroidism with small fibre neuropathy - nothing we can do..” etc. Small vessel vasculitis can be mild (there are many types of vasculitis - even including Raynaud’s technically) and is common with Sjögren’s, often affects the nasal tissue so worth researching in want of other explanations.

Twitchy 🤷🏼‍♀️🙂

[SamTheTurtle in reply to Hidden]

Was not aware that Small vessel vasculitis can affect nasal tissue like that. Thanks muchly for the info!

[SusieW2]

Sorry, just got in on this thread. I used to get sores and swelling in my nose. Now I have a small ultrasonic cool-mist vaporizer that I use at night especially in the winter. I put in a few drops of essential oil that assists my sinuses in draining, keeping the passages moist and clear. Use a good essential oil or oil blend. I use Veriditas Sinus Formula. It is a Minnesota based, woman-owned company but has a website. maybe under Pranoram. I also use a salt inhaler morning & evening which seems to control some my post-nasal drip without all the side effects and drying of an antihistamine. Both contribute to better sleep by the way. I've also been known to swipe a little petroleum jelly just inside my nostrils if they get bad. Dr. advised this once. Good luck!

[Narita]

I also find that humidifiers help. Here in the United States of America, we have a product called Xclear, which one can get from amazon. It is a nasal spray with xylitol, which thins secretions and helps soothe my nasal passages. It has been a lifesaver for me, but I do not have the outward red bumps you speak of. Best of luck.....

[SamTheTurtle in reply to Narita]

Thanks Narita for replying! Twitchytoes advised she has the red bumps of small vessel vasculitis. I do not have that symptom. I use humidifiers in the winter. Xclear sounds interesting. Will check that out. Again, thanks muchly!