Anyone else suffer with reoccurring sinus problems? - LUPUS UK

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Anyone else suffer with reoccurring sinus problems?

Hhsegibs profile image
9 Replies

I seem to get sinusitis quite regular and end up on antibiotics as the infection never seems to go on its own. I suffer for weeks at a time and as a lupus sufferer it really takes it out if me, I'm tired more, ache more and generally feel really sorry for myself. Just wondered if there is some sort if link between the two?

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Hhsegibs profile image
Hhsegibs
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9 Replies

hi

ive always questioned this as part of lupus but my rhuemy has said no its not how lupus presents itself.

i too suffer with sinus but not so much lately,however whenever i get a cold i get an infection,i have been checked out by ears nose throat doc but she said sinus are fine,so i have just excepted it (im getting very good at that). if you find anything out let us know.

Tigerlily4 profile image
Tigerlily4

After almost 3 decades battling this wretched blight to humanity, lol, it's clear to me we lupies are not only far more prone to develop infections than the general population - no matter what medication we're taking - but also that infections often take far longer for us to shrug off. The tetracyclines are apparently good for sinus infections, which I usually develop with cold or flu viruses, but I can't tolerate them. Failing that, Cephalexin or Amoxicillin. You may also not be aware how important it is and what a difference it makes to take the tabs at exactly 8 hour intervals and to finish the course. Apologies if you do - I used to be pretty lax about it, often taking 2 tabs in one go or stopping once there was any improvement, but now know better!

Coppernob profile image
Coppernob

HHsegibs, have you been checked out for vasculitis?

Barnclown profile image
Barnclown in reply to Coppernob

Hi coppernob: am curious: why vasculitis? (I ask mainly cause vasculitis is what my rheumy thinks I'm heading into, and sinusitis has been one of my most persistent probs lifelong).

Coppernob profile image
Coppernob in reply to Barnclown

Because sinusitis is a major symptom of vasculitis.

Barnclown profile image
Barnclown in reply to Coppernob

Thanks coppenob: i.e. wegeners vasculitis......

Barnclown profile image
Barnclown

I agree with tigerlily, except I've become resistant to amoxicillin.

I too have been predisposed to infections and had SLE all my life. Sinusitis has been a big part of my picture all my life, I am 59.

In 2011 the worst sinusitis i'd ever had developed as part of a longstanding grumbling upper molar infection (I have always taken almost ocd-type good care of my mouth/teeth, but my rhuemy feels that due to my SLE predisposition to infection, this molar infection had lingered nearly 30 yrs despite good dental care inc root canal work until I finally had to have the molar extracted in 2011). Anyway, this molar infection had apparently spread into my upper jawbone (osteomyelitis) and come through into my sinus, giving the most acute sinusitis I've ever experienced. I was put on high dose oral flucloxacillin for 5 months until last spring when ct scan indicated no infection left in jaw bone or sinus. We'll never know, I guess, how relevant this tooth/jawbone infection was to the frequent bouts of sinusitis I've had all my life...especially as these bouts were usually on both sides of my head, whereas that bad jawbone/sinus duo infection was only on the left side.

Whatever, during those 5 months in 2011-12 of flucloxacillin, I learned a lot more about how to manage my sinuses (ENT & oral sugeons & maxillofacial consultants were very helpful). Also I learned that the roots of your upper teeth can, with age, intrude into the sinus above, which makes dental hygiene even more important. Possibly one of the best tips I learned from ENT was to use neilmed sinurinse (i get mine from amazon)at least 1x per week even when you don't feel like you have active sinusitis. Before I discovered neilmed products, I'd tried everything eg olbas products, OTC nasal sprays (which you probably know can actually cause inus probs if used persistently)....nothing has helped me to hold infection at bay as much as neilmed products have.

I agree it's vvv important to strictly follow guidance when taking antibiotics, eg re the intervals between pills. And flucloxacillin also requires fasting before and after the tabs are taken. Also, I have been advised by a microbiologist who has had SLE for 20+ years, that it's best to avoid dairy products while on antibiotics...and if you must take dairy, allow say 1-2 hrs before & after taking your antibiotics tab

I feel awkward going on at such length bout this, but it's an important subject to me, and I wish you well

Take care

Nightjar profile image
Nightjar

Hi H.., Recurring sinus problems can be due to allergies or sensitivities, in which case antibiotics won't help. In my youth, I was on antibiotics (for years) several times a year ..never got rid of the problem! I even had a tooth taken out, as docs couldn't find the reason for my constant blocked up sinuses and sent me to the dentist - who sheepishly looked at my perfectly healthy tooth, on the tray, saying 'oh, ..'twasn't the tooth'(!). Years later, it turned out my problems were due to food sensitivities - been a long journey. It isn't unusual for lupies to suffer from allergies/sensitivities - so ..kind of 'a link.' Hope you find out what the problem is, in your case, soon - good luck. :)

anbuma profile image
anbuma

ihave fibromyalgia and raynauds and have had sinus problems for a year .I started getting nosebleeds so went to DR and was given nasal sprays,i also had swelling in my nose and eyes plus bruising around eyes and head pain.it took a year of going back and forth to DR

and being giving more sprays and antibiotics before I finally got a referral to ENT.no one has told me sinusitis is linked to anything else.ihave been asked if I have lupus or vasculitis (which I have not heard of)

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