Lupus and Chronic Sinisutis: I have Lupus and been... - LUPUS UK


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Lupus and Chronic Sinisutis

Doreen2014 profile image
17 Replies

I have Lupus and been suffering for months from sinisutis had numerous nasal sprays from GP and antihistamines all with no effect.

Any suggestions please.

17 Replies
Barnclown profile image

Am so sorry Doreen: miserable when this persists.

Chronic sinusitis has plagued me since childhood. ENT couldn't figure out the underlying cause, but told me to use Neilmed sinus rinses: am now a HUGE fan. There is virtually no limit to how much & how often you can safely use Neilmed products. I get mine from amazon, but Neilmed has a good website:

Has your gp taken a nasal swab for lab analysis so you could make sure you're taking the right antibiotics?

🍀🍀🍀🍀 coco

Doreen2014 profile image
Doreen2014 in reply to Barnclown

Had two courses of antibiotics.

The discharge goes down the back of my throat.

No infected discharge.

Barnclown profile image
Barnclown in reply to Doreen2014

So lab tests came back neg? Has your gp suggested rhinitis etc?

If this is infection, sometimes we need longer course, higher dose antibiotics...but usually it's best to get a lab sample tested to be sure you're on the right antibiotic

I know this sort of discharge. Medics called my version of this post nasal drip

If longer course high dose antibiotics don't help, my feeling is that you & your gp would do best to consider referral to ENT

For what it's worth: My understanding is that there can be several reasons for chronic complex persistence pattern infections like your sinusitis. I know this only too well because immunology has been investigating my infections and I am now permanently on daily antibiotics (HURRAH: my sinusitis (and my other multisystem infections) are all way damped down). First off, lupus makes us prone to infection. Then, our immunosuppression meds mean we're even more susceptible to infection. More unusually, some patients, like me, are ultra prone to infection because our bone marrow can't manufacture enough immunoglobulins & white blood cells.


Doreen2014 profile image
Doreen2014 in reply to Barnclown

No lab tests been done.

Think it might be Rhinitis as it's like a nasal drip down my throat.

Will contact GP and get ENT referral.

Barnclown profile image
Barnclown in reply to Doreen2014


Doreen2014 profile image

Thank you for the reply I will look into this product as I need some relief

Barnclown profile image
Barnclown in reply to Doreen2014

You're vvv welcome Doreen 😊

Take care...these infections take an awful lot out of vvvv much feeling for you

Hope you'll let us know how you get on


Doreen2014 profile image
Doreen2014 in reply to Barnclown

Thank you yes I will update you.

KRutherford profile image

I'd be curious to know if either of you have experienced worsening of your sinus inflammation when having a lupus flare - this has been happening to me over the past couple of years. It usually is accompanied by an exacerbation of asthma at the same time. I have non-allergic rhinitis and sinus inflammation - seems like anything that can float in the air disrupts my respiratory system. I have seen an allergy/asthma/ immunology specialist for this . I finally did have a sinus CT done last year to rule out polyps or other structural sinus problems. Your symptoms could be allergy or non- allergic related Doreen, or sinus abnormalities, or chronic low grade infection like Barnclown was referencing. My theory is it's another system that is susceptible to our inflammatory state with lupus. I'm sorry you're having this - it adds to the exhaustion and the "one more" feeling from lupus symptoms anyway . Hope they get it figured out and treated for you!

SH55 profile image

Very interested to hear this. I have had post nasal drip for years, a ct scan showed no polyps and I don't seem to be allergic to things. I was given 10 mgs of amitriptyline to help side effects of Leflunamide (Lupus med) which was very loose bowels and it greatly helped the runniness of the post nasal drip as well. However, I am going to see an ENT doc because I have hopes that more can be done. Try the amitriptyline because it made a difference especially at night , reducing my coughing and spluttering.

I've just had sinusitis for five long weeks and Amoxicillin has worked but no discharge either - just the post nasal drip and an extra horrid salty taste, thicker saliva etc. I have Sjögren's and this is the cause of my sinus, throat, post nasal drip/ rhinitis, GI problems, nose bleeds and sores - all of which I've suffered from for many years.

Might yours be Sjögren's related too perhaps? I have had a cold virus and also been flaring despite Mycophenolate so this hasn't helped but I also find that taking a Piriton every night is invaluable. Just to add a note if caution re dryness - Amitriptyline made my Sjögren's Sicca much, much worse.

VanK profile image

Very interesting post & sorry to hear others suffering with sinusitis as well. I've been getting for the past 16 or so years, definitely worse at this time of year with hayfever/allergies etc & interestingly I had my first (UCTD) flare at this time two years ago. Second one came this time last year (and hasn't really gone away).

I've used a neti pot with a saline wash for years, and turmeric (1500 mg tablets) which seemed to cut down on my chronic sinus inflammation for years. I recently stopped the turmeric (and all supplements) to get bloods done and bingo, sinus infection came back.

I've also just been on a course of ab's which have cleared up some of the sinusitis/chest infection but still have some symptoms. I'm back on my turmeric & saline wash so hoping this will help. I've been checked by an ENT - no polyps but I do remember him saying something about small sinus cavities?!

Hope you find some relief soon Doreen

KRutherford profile image

Good point Twitchytoes- a large number of lupus people have sicca syndrome also. ( me too). All that dryness in the respiratory system keeps the cilia and " cleaning" system there from functioning normally , allowing entry of pollutants that inflame and irritate. I have also used the Neti pot and nasal saline sprays (as well as cortisone sprays and other meds ) with at least helpful results.

thanks for the reminder about turmeric, VanK -I've gone back and forth about taking it for its anti inflammatory properties- I've tried to use it frequently in cooking Indian food

Lupusandmore3 profile image

If I were your GP I would send you off to an ENT at this point for a scoping inside your sinuses to see what is going on. You are not a run of the mill patient- you have an autoimmune disease- and that could cause all sorts of problems in your respiratory tract: ulcers, perforations, chronic infections, abscesses, you name it... if you are not better after all this time it is time take it up to the next level.

Doreen2014 profile image
Doreen2014 in reply to Lupusandmore3

Spoke to my GP today putting me on antibiotic. If that doesn't help I will request ENT referral.

Used to attend ENT years ago and had a sinus op then.

This has been going on for four months now so getting a bit fed up with it.

DJK99 profile image

Hi Doreen - I and my mother and brother have all had this since very young. It's most embarrassing isn't it ie your nose suddenly drips - any time, any place! Constant tissues etc, crispy, red nostrils (looks lovely) and (when I used to bother as much!) ruined make up. My friend who has rheumatoid arthritis also has this problem and she gave me a bottle of her remedy which is Sterimar- I find it works quite well! It's a bit weird getting used to using it but worth it in the end.And there are no chemicals in it to add to our list! I went through the usual steroids up nose etc via GP etc but it never worked. I did read about a condition whereby the nose is malformed so doesn't work properly and leads to forever dripping nose but cannot remember what it was now. Maybe a google. Anyway - I do hope this works for you, along with the other suggestions. All the best. D

sunrise profile image

Hi there, I have the same problem.... I've found using a the saline spray helps clear it when I'm really bad, eucalyputus on a cotton wool ball tied above my bed ....

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