Has anyone else had a nasal septum perforation as a result of having Lupus?
I have had oral and nasal ulcers from the get go but, at the end of last year, I discovered a hole in my nasal septum. ( The gristle wall that divides the nose into Two.)
The hole appeared when I had "back to back" ulcers in both sides of my nose. When they healed up, I was left with a hole between the Two sides of my nose where the ulcers had been. It does not hurt but, it does whistle when I breath. My specialist doesn't want to do anything about it, other than keep an eye on it.
When I have conducted an internet search on it, not much is thrown out, other than a piece about a nasal septum perforation as the presenting symptom of lupus. Has anyone else heard about this condition or suffered it in relation to SLE?
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Tonk
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Yep: ENT said my husband's Crohns predisposed him to his SP 😏. After 30 something years of Crohns we've discovered the amazing way this immune dysfunction/connective tissue disorder affects pretty much his whole body....and most people think it only affects the bowel!
Hi Tonk. There are a few of us on here. Mine happened a couple of years ago after sudden onset of terrible nasal sores & crusting. My Rheumy told me that yes, it 'can' happen in lupus implying that he didn't think it was very likely. ENT consultant didn't question for a second that there was any other cause than SLE & started me on Nasonex & Sterimar but told me that he would never consider surgery on Vasculitic conditions such as this. I don't have the finger strength to depress the Sterimar spray so no longer use it but the Nasonex is good stuff. I'm not vigilant enough with 'nose care' and my hole has enlarged so take my advice and treat it daily or it will get bigger. Mine isn't even being monitored anymore. The whistle is a sign that the hole is small. Hope this helps a little xx
I see my Rheumy this Friday so I will mention it to him again and see what he says: when I first told them about it, they weren't that interested to be honest. The ENT specialist to whom I was referred by my Rheumatologist, looked at it just to ensure there was no underlying nasty pathology causing the perforation. In my case, surgery was not even mentioned.
Hi Clareb67, I know you and I have discussed this before but I'm really interested in the vasculitis comment made by your Rheumatologist. Mine didn't mention it. I also don't have the strength to use the Sterimar but use loads of vase line!
Hi MargaretGail. I also use Vaseline for maintenance as its so easy. I do trust the ENT surgeon's opinion of not meddling surgically with these perforations - not least because I saw him privately and he could have earned a nice sum from me! I can well believe that the chances of surgical success would be small and actually could worsen things in the long run. It's just another thing to live with!
Hi Tonk I have a large hole in my septum caused by ulcers on both sides too. The Rheumatologist had never heard of it but ENT said they only see it in Lupus. I use a lot of vase line on mine the trick is to not let it get dry and bleed.
Thank you for the reply.....I will give the Vaseline a try. At present, I am using Savlon which seems to work OK but I find it sometimes drains back into my throat over night which is not pleasant to say the least!
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Diagnosis
Sjogrens symptoms?
Frequent UTIs 
POSITIVE ANA but negative antibodies.
