Constant sinus infections and loose toenails

[Jeffscott69]

Does anyone with connective tissue disease and lupus have constant sinus infections,iv had 4 ops to clear them,constantly on doxycycline antibiotic,prob to get another op,also my big toe nail always attaches at sides.but not nail bed,hence comes off.

[EOLHPC]

You've been through an awful lot, Jeff.....chronic sinusitis is me too, but my version is now finally mainly manageable without antibiotics thanks to an ENT consultant turning me onto neilmedsinus rinse products. And so far I've got away without any ops.

This has been going on for 61 years (when I was little, my mother regularly took me to the "nose Dr" who did *** knows what to me involving filling my passages up with something, then stuffing my nostrils with cotton wool and leaving me upside down for 30 minutes). Now, even with the assistance of wonderful neilmed products, sinusitis is a constant problem, sapping my energy and requiring complicated, boring management routines (sorry, but am treating a flare and feeling fed up & frustrated). My most thrilling episode combined with osteomyelitis in my upper jaw (I'd never actually realised how possible it is for the upper jaw bone to share infection with the sinuses directly above) which involved 5 months on daily high dose flucloxacilin with its awful fasting requirements...that was a long nightmare...and my understanding is that the osteomyelitis could flare again, especially if I don't manage the sinusitis effectively as poss

A couple questions for you:

is your blood tested for immunoglobulin levels? Recently rheumatology discovered I've got hypogammaglobulinaemia (low IgG, IgA, IgM) and because I also have chronic leukopenia (but only always just below normal), our head of lupus clinic has referred me to immunology...my first appt is a couple weeks away. Meanwhile I've been prepping & learned a lot about my long term predisposition to infections inc sinusitis....which existed for decades before my infant onset lupus was recognised & treatment on immunosuppressives begun 4 years ago

Are you on mycophenolate? My prep for immunology has turned up current published research studying the possibility that various immunosuppressants may be implicated in hypogammaglobulinaemia

Anyway, am feeling for you & wishing you all the best....and looking forward to reading the replies you get

[Jeffscott69 in reply to EOLHPC]

I see ent surgeon in 2 wks,only thing I'm taken is sterimar and antibiotics,the smell awful and what comes down is like green glue,my lupus was picked up because sinus ops were not working,he said was my imune system,reumatologist maybe thought I had weganers?,but then said it was lupus,I get jabs for B12 deficiency and take thyroid tabs,I feel they missing something,last sinus op took biopsy,said inflamation in sinuses chronic,he said it had went on for long time because of the inflamation,so fed up with it,just about at work,I could honestly sleep,it's horrible.

[EOLHPC in reply to Jeffscott69]

Am sorry you're going through all this: not at all pleasant.

It's good your Drs are watching you for vasculitis (wegners granulomatosis), mine are watching me too for this. Sometimes diagnosis can be a long process.....

Not all of us go into the detail of our blood tests with our consultants, but, for what it's worth, if you haven't already, might be good to ask your consultants about your various white blood cell levels (neutrophils, leukocytes etc), your complements & your various immunoglobulins (gammaglobulins G, A, M etc). Perhaps these results can help you gain more understanding of the complex of reasons for your chronic infections...and perhaps your consultants will refer you to immunology....

Take care...keep your chin up😏

[Jeffscott69]

I have positive anca,and double stranded DNR antibodies,just feel they missing something,.

[Fighting]

Before lupus really set in, I worked in a camp and told the camp head that I got summer colds. She said pay attention to when the itchy, scratchy stuff, starts and stops. I think you have hay fever. I never had it checked out and just used a generic non drowsy antihistamine. Fast forward: Close to 30 years later, I get all stopped up when I lie down to sleep, every night. My nose can run constantly most days and my right ear has a dullness to it, close to feeling clogged. Sinus problems run in my family. I believe I will attempt Eucalyptus oil in hot water first but if that does not provide relief, I will try to see an ENT I heard about. He seems to attempt the unconventional methods prior to medication and surgery.

[Jeffscott69 in reply to Fighting]

I had CT scan,shows where it keeps blocking and have crusting,,smell is foul and at night,drips down back of throat and re burns,it awful,be interesting what ent surgeon does next,no meds is working,yeah have lupus and connective tissue,but don't know what one causing this,sinus ops hellish,wake up feeling as though you been banged on nose,4 times had this and no success.