Hello everyone....
I'm just wondering if any of you suffer badly with sinus infections and have been told it's related to your Lupus?
My Ent Dr has said that he believes this to be the case.
I get terrible infections that just refuse to clear for months on end and antibiotics just don't seem to dampen it down and then it flares again.
Just curious if anybody else gets this.
Thanks
Nicola
Hello nicky. It’s v good ENT is acknowledging lupus could be involved...ENT isn’t always willing to admit this!
Yes my luous is infant onset and i’m 65. i have chronic early onset persistence pattern rhino-sinusitis (alongside persistent pockets of bacteria driven sepsis in other body systems...i’ve even had septicaemia, which i think you have had too). Figuring out what my rhino-sinusitis + other constant complex multisystem infections are about has been a long saga from childhood till my 60s when brilliant consultants’ insights + treatments finally began to help
I guess your rheumatology clinic is aware and has looked into the possibility your immunosuppression meds may be implicated in some way? And i guess your GP & ENT clinics have run all the usual tests inc lab tests to ID the bacteris involved + imaging + allergy testing and proven there are no prime suspects?
And i guess you’re doing all the recommended line treatments, especially twice daily sinus rinsing for ever? And i guess you’re doing your best re lifestyle stuff like pacing activities, exercise, nutrition etc. I only ask this cause until i was doing all that and my chronic early onset rhino-sinusitis still hadn't cleared up much at all...in between severe persistence pattern infections when i was highly symptomatic, i remained constantly symptomatic to a lower, but still debilitating, degree
We know i have long history of chronic lymphopenia & low complements which are related to my infant onset lupus and not caused by my immunosuppression meds. And added to my immunosuppression meds, this has to factor into my rhinosinusitis. So my lupus has always been considered one underlying cause
finally my rheumatologist realised i also have a history of hypogammaglobuinaemia: that’s chronically below range immunoglobulins G,A,M...so i was immediately referred to immunology. Immunology & rheumatology became my lead clinicians, and immunology referred me as well to an ENT/immunologist consultant who made sure his sinus surgeon also is involved in my case. Between them, this multidiscipline team has my chronic rhinosinusitis reasonable damped down, so long as i stick to my daily ENT & lupus & hypogammaglobulinaemia treatment plans
It’s turned out my below range Igs (immunoglobulins) combined with the low lymphocytes & complements set me up for persistent multisystem infections including in my sinuses. Do you know whether your immunoglobulins’ levels have been tested? Do you have a history of persistence pattern infections inc sepsis in other parts of your body, especually respiratory tract infections? These could mean you need checking for a simultaneous immunodeficiency
If you aren’t aware of your WBC (white blood cell) levels inc lymphocytes, and/or of your immunoglobulin levels...maybe worth asking your medics. It’s unusual to have simultaneous autoimmunity & immunodeficiency like me, but it happens. And this could all play a part in your persistence pattern sinus infections
Hope something in there helps - apologies for the long reply, but like some of us, my version of this is complex and has taken a lot of patience & determination to figure out.
am sure you’ll get great replies, cause there are many experienced sinusitis patients here with profiles different from mine. Chronic sinusitis can be v complex, and come due many versions, and be very hard to figure out
🍀🍀🍀🍀 Coco
Hi Nicky! I've had constant sinus infections for the past 12 years or so, coinciding with my first big flare....I have nose inflammation too, and it seems this is very rare, but I do have 'badly damaged nasal structures' - as ENT told me last autumn - after breaking my nose 45 years ago. 😕
A rhinoplasty expert said my nasal deformity is due to inflammatory disease and 'thinks' it isn't vasculitis due to negative ANCA twice, a clear CT sinus scan and normal mucosa....though of course all of those these can change due to the fluctuating nature of autoimmunity 🧐
A biopsy would provide conclusive evidence, but I'm not willing to risk further damage to my nose (which could happen if there is already inflammatory damage 🤔 ), so the plan is to take tissue samples from the nose and sinus if rhinoplasty goes ahead..
SO, as my ophthalmologist said ( ? 🤗 ), vasculitis can be part of lupus, and since there is a different treatment pathway for the kind that affects the sinuses (GPA - Granulomatosis with Polyangiitis), it might be worth asking for this to be ruled out....tricky....both biopsy and ANCA are inconclusive if negative
As Coco says, daily rinsing becomes a way of life, unless surgery to widen the drainage passages from the sinuses would help, though I guess ENT would have suggested that if it was a possibility
I've not had any treatment - other than a steroid nose spray that made my nasal linings swell up 🤣 🤣 🤣 - and I suspect that over the years, I have permanent damage due to long-term infection - atrophy - so it's definitely worth pushing for all the things Coco has noted, swabs for bacterial/fungal infections etc then a specific long-term antibiotic might be the way forward
Another long reply, but it's something that affects your breathing therefore your sleep, making everything that bit harder. Hoping ENT have some answers for you xxx
You really have been & still are up against A LOT in this dept, eekt! And you really know this complicated subject inside out. I’m only just beginning to understand it. You probably know this ENT/Immunology book already, but together with the info you’ve shared here, it’s been helping me get a grip on autoimmune disease-related sinus issues like ours...just before christmas i got it as a kindle on amazon...it’s BRILLIANT and not so academic i can’t understand what it’s putting across:
amazon.co.uk/gp/product/B00...
Re treatments:
For decades i’ve been fobbed off by GPs + ENT with treatments that’ve barely helped... i’d decided my version of this could never improve...but self help + lupus meds + immunology’s daily antibiotics forever + ophthalmology’s ciclosporin drops (which leak into my nasal passages & sinuses) all have managed to be therapeutic. Ophthalmology may have to pause the ciclosporin drops, so i’ve been wondering about a steroid spray during the pause, but your feedback is making me cautious...thanks. So COOL that ophthalmology is taking an interest your sinuses too - i guess it’s inevitable due to the way topical eye meds do get into that region...
Re ENT surgery:
last week the ENT/immunology consultant + his surgeon colleague emphasised that my latest CT is so clear + self help & first line treatments & immunology’s daily antibiotics (with extra added on during flaring infection) are ALL helping enough to make the risks & sideffects of FESS (functional endoscopic sinus surgery to widen the sinus drainage passages) not worth taking...i was v surprised, but these guys are top of their field & know weird patients like me with simultaneous autoimmunity & immunodeficiency. They actually seemed quite freaked by the thought of operating on me with things as they are...and warned that FESS really could make my sinus issues even worse.
After 65 years of constant sinus stuff, I’m feeling fed up & v willing to have FESS...but, for now, it’s not to be. So i feel as if i can at least come close to beginning to relate to your courageousness re facing up to major surgery in this region🍀❤️🍀❤️🍀❤️
Oh, I was on the nasal spray without monitoring for 18 months...it's designed for hay fever ie short-term use! 🤣 XOX
Ooo i forgot that lou: yep, my sinus symptoms do worsen when am lupus & co are flaring! XO
Thank you all so much for your replies
To be honest my rheumy is not very good and I have seen him today and he still says that sinus issues are not related to lupus.
I feel like I am stuck between a rock and a hard place as I'm under 2 separate hospitals for Ent and Rheumaatology and 1 says 1 thing and the other says another.
My spleen is enlarged too and the rheumy even argues that this is not really a Lupus issue......I am totally at a loss as to what to do now.
Do live in an area where you can ask for a referral to another specialist? If so, it might be worth asking to see an expert with knowledge of sinus involvement...I think Dr Jayne in Cambridge is one.
My rheumy took fright when I mentioned vasculitis...if you can, change your rheumatologist. xxx
Sometimes rheumatologists mean different things when they say “not a lupus” issue. It can mean not directly related, that the relationship is not proven yet or that, maybe in your case, your lupus and medication compromises the immune system and you get more infections. The others here know tons more about the ENT issues, but I would suggest that you follow the advise of the ENT here. He knows the subtleties of how autoimmune diseases impact the sinuses. Your rheumatologist would not likely treat this specific issue anyway. So I would go with what the ENT says and follow his treatment plan. Good luck with all of this. K
Hi Nicola,
I don't suffer from sinus infections but I have been anosmic for some while (5 years). I put it down to a bad chest infection but my sense of smell has not returned. I have wondered whether it is linked to my lupus. Do you still have a sense of smell? Not being able to smell has its advantages but I'd much rather be able to. There is a good charity called Fifth Sense fifthsense.org.uk/ which you may find useful.
Judging by some of the replies, it might be something worth investigating further.
Best wishes.
Mark
Yes, I just finished 3 separate prescriptions, one after the other. Finally getting results, I’m still taking mucinex 1200mg almost every day. Cleaning CPAP as often as I can....I live in California, San Joaquin Valley...we live in a bowl full of filthy air. Masks are a nightmare to wear...I don’t go out much. Good luck🙏Wish I had a solution😳👋Ann
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