For at least a year now I have woken up every morning feeling full of a cold, blocked nose, cattarh in my thoat and a chesty cough for a couple of hours until it clears. Recently I have also started getting bad pain in my sinus' on the right side of my face.
It's something that I always forget to mention at appointments as there is always so much to discuss.
Does anyone else have this problem? Is it worth talking to the GP or rhuemy about?
Yes! I think lots of people report sinus infections on here. I have chronic congestion, crusting and bleeding (yuck I know), going to mention it to my rheumatologist today because I think the crusting thing is supposed to be significant. If yours is a sinus infection hopefully your GP should be able to help and sort the pain out
Yes...this is no picnic...I've been trying to manage this all my life...I'm 63 and my lupus is infant onset....my mother was perpetually taking me to the "nose doctor" who stuffed cotton wool drenched in who knows what up my nasal passages: miserable memories.
You're right: keep a log of this, make sure both your gp & rheumatologist document the persistence pattern of these signs & symptoms and do everything possible to get samples of mucus etc lab tested so that details of any pathogens involved are on your record while you get to the bottom of this
Typically, there can be several overlapping underlying causes for these issues. In my case, I'm told lupus + sjogrens + mild vasculitis are involved...and immunology have also figured out my sinuses (& stomach & uro-tract) have chronic pockets of bacteria-driven sepsis due mainly to my early onset Primary Immunodeficiency making me highly susceptible to respiratory infections (onset was way before my treatment with immunosuppressant meds). These "pockets" do not show up on MRI, which my consultants say "happens". I think this is why ENT has never got to the bottom of my chronic sinusitis
Treatments that have helped me most are:
- a few years ago ENT finally recommended Neilmed products as therapeutic maintenance treatments...the sprays & douches have been a great help...I spent years using them daily, and still use them now occasionally even though other treatments have finally begun to improve my case greatly (I get neilmed from amazon)
- infected nasal lesions & ulcers respond well to prescription topical antibiotics (bactroban &/or naseptin)
- sorting out failed root canal treatment in an upper jaw molar: its roots had protruded into the sinus cavity above, spreading infection
- immunology now has me on daily oral antibiotics due to my predisposition to respiratory & sinus infections ...this antibiotic treatment has damped the chronic sinusitis down... more than any treatments tried before...and I haven't had any respiratory infections since treatment started
- my eye clinic cornea expert put me on daily ciclosporin eye drops.... inevitably a bit trickles into my sinuses through my eye ducts ...any sinusitis that has resisted the daily antibiotics is getting wiped out by this ciclosporin leakage. Which tickles both my ophthalmology Consultant & my lupus clinic chief "pink"
- I assume my daily oral combined therapy lupus meds are also helping....none of my consultants want to reduce my treatment with immunosuppressants, but, of course, this does make us more vulnerable to infection
Hope something in there helps you get to the bottom of whatever is causing your problems
Please let us know how you get on
🍀🍀🍀🍀 coco
Thank you. I use naseptin regularly as I am always getting sores in my nose, which is probably related to the sinus problems. I'm due to start methotrexate in the next week or so (waiting for the metaject pen to be delivered) and have been told by rheumatology not to take mtx if I have any sign of infection, so the sinus problems have me a little concerned. I think I'm going to get a gp appointment and see what he thinks.
Thank you for your advice
Good thinking.
😉 My case of this is probably somewhat extreme...it certainly has taken medics a lonnnng time to figure out. Meanwhile the neilmed products + topical antibiotics really did help me cope with the constant signs & symptoms 🤧...AND my feeling is that regular neilmed treatments reduced the frequency of my need for naseptin etc for infected lesions...but I also credit my lupus treatment plan (hydroxy + pred + mycophenolate) with reducing occurance of nasal lesions
There is every hope your version of this is more straightforward
Take care 🍀🍀🍀🍀
Coco, if your sepsis pockets do not show on MRI how did they find them, if you don't mind me asking? I have similar stuff going on for 30 years. Tks
Good question.
there are many versions of immunodeficiency. And some can be simultaneous with autoimmunity. My impression is that "chronic pockets of bacteria driven sepsis" are most likely to take hold in cases of immunodeficiency.
I have spent 2 years being investigated by immunology after Rheumatology referred me due to sinister lab blood test results indicating immunodeficiency characterised by bone marrow dysfunction (hypogammaglobulinaemia & lymphopenia which arose before treatment with immunosuppression began). But others can develop immunodeficiency simultaneous with autoimmunity for other reasons
Basically, my understanding is that my version of "chronic pockets of bacteria driven sepsis" had become entrenched over the course of a lifetime without adequate daily systemic treatment for both infant onset lupus and the lifetime of simultaneous increasing "complex persistence pattern infections" my version of simultaneous lupus & immunodeficiency predisposed me to. Various multisystem clinics investigated my signs & symptoms (ent, urology, gastroenterology etc), but their treatments didn't clear these up satisfactorily...and questions remained
last spring, the Chief of my immunology clinic explained his diagnosis of "chronic pockets of bacteria driven sepsis" was based on my history of infection + clinical examination & immunologic blood results + my inadvertently positive multisystem response to antibiotic treatments (e.g. IV gentamicin during an urology procedure under GA damped down chronic infection symptoms in my stomach & uro-tract, and long course high dose antibiotic treatment for UTI + pyelonephritis also damped down my lifelong sinusitis).
So, last spring, he prescribed long term treatment with relatively low dose of antibiotic (coamoxiclav 625mg 2 tabs daily). The proof is in the pudding: I'm doing very well on this treatment plan, my chronic sinusitis & gastritis & urinary tract infections are all clearing up and I've had no recurrence of chronic osteomyelitis in my upper jawbone.
I'm continuing to be investigated by immunology...so we don't yet know the full story of my immunodeficiency: I attend immunology clinic several times a year when they monitor me and run extensive blood tests. We'll see what conclusions are drawn in the fullness of time 😉
For now, based on my case, if I were you, I'd sit down, set up a list of your body system history of infections, and keep this listing live on your computer. Include details of indecency, severity, persistence, , treatment (specifically which antibiotics helped how with which infection) and of any lab test results re samples taken during infections.
If infections recur and become persistent, I'd use my infection history listing to push for investigations of the underlying causes. Which will probably mean referral to ENT, urology or whichever clinic are relevant. And meanwhile I'd use my infection history listing to ask Rheumatology for immunologic blood tests including various types of white blood cell and immunoglobulins.
Hope something in there helps...sorry for going on at length...I'm in the UK still getting my head around this myself 😏..please let us know how this goes for you in the USA
🍀😘🍀😘
Great info. Thanks so much CoCo.
Hi , i suffer with sinus probs as well, i use saline nasal spray 2-3 times a day , when things get bad i steam 2-3 times a day and gargle with salt and cider vinegar. I would always have a catch in my throat aswell and i have to constantly clear my throat . If you are bring up alot of green mucus you have an infection and may need antibiotics. I hope you can get some help with it , i always forget to mention it to doctor as well !'!!
Thank you. I think it's just one of those things that you get do used to, you forget that it's not actually normal to be like this every day!
I'm only recently in the process of investigating wether I have Lupus but for 2 yrs now I'd been having these sinus issues ultimately turning into infections. I just figured that I had a weak immune system (sickly since I was a kid) but since I didn't want to take antibiotics, every two weeks which would ruin my tummy microbiome, I rinsed my sinuses with colloidal silver or put it into my nebulizer and breathed it in. Worked every single time. Even cleared up 2 bouts of pneumonia. Now I understand why I'm getting these every 2 weeks and am using nasal saline spray to keep it at bay before it becomes infected.
Sorry so long winded, hope it helps.
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