Lupus and Sjogrens issue

[Nanosaint]

Has anybody ever had issues with lupus/sjogrens in their ears? I caught a cold and mucus has settled in my Eustachian tubes or something and they have been blocked now for over 15 months. I have so much fullness and pressure in both ears and I have lost a lot of my hearing. Prednisone hasn't helped. Nothing is helping. I'm going out of my mind from the stress and anxiety it is causing me. No Dr. can tell me what is happening and there are no good tests to show anything. My theory is that the Sjogrens has destroyed all my moisture and oil producing glands in my ears and the thick rubbery mucus can't thin out and won't dry up. It's agony and I feel so down that there is no help to get relief so I have to suffer with this and not even know why. Anybody else ever had a problem like this or know of anyone who has?

[MrsMarigold]

Hi. Did you write about this not long ago? The doctor s have lost their minds for thi to go on so long. What tests have you had? You need a specialist Ent WNT who knows how to remove the debris and possibly infection Have use of one arm right now sorry for typos. When I was a kid I suffered bad ear infection anb doctor literally pulled debris out with a metal instrument goes to show they did what they had to. I’m sorry don’t do that yourself Mm

[sarahsch]

Hi Nanosaint,

I thought on reading the title I was going to be able to help you. I have very dry ear canals & the itching was driving me insane!

Your problem is different though. You have my sympathy. It sounds awful 😞. It might be eustachian tube dysfunction which can develop after a cold. I found this online with some things to try. Failing that can you get an ENT referral?

chelwest.nhs.uk/your-visit/...

Take care,

Sarah x

[Halfwayuphill]

Hi Nanosaint,

I have UCTD and as far as I know do not have Sjögren’s but have had many issues with my ears over 20 years and ent are sure it’s my connective tissue problems. I wear hearing aids but my hearing fluctuates with the illness and I get dizziness but that could be my blurred peripheral vision. I see ent every few months for suction but last year I had Eustachian tube dysfunction in one ear and it blocked last year and my hearing aid couldn’t work with it. On the advice of my audiologist I bought an Otovent balloon thing for glue ear. You blow into a ballon from your nose! I also had to do steam inhalation twice a day. I’m having trouble remembering how I got rid of it but I believe after this treatment he managed to suction it out. I buy my hearing aids privately as in my part of Surrey they only fund ones like bricks for my level of hearing. The good thing about buying them is I’m seen every few months. ENT I see on nhs.

Hope this helps and you get some relief soon