Sjogrens/Inflammation/Uvulitis

@gracenad. Welcome to Mayo Clinic Connect! Having an inflamed and swollen uvula must be very uncomfortable. You said that you saw your rheumatologist, but that she wouldn't help. Have you seen your family physician? They are the ones to treat something like this. I included the link to information from the Cleveland Clinic. It talks about the causes and remedies or home treatments for uvulitis.
https://my.clevelandclinic.org/health/body/22674-uvula#:~:text=Sometimes%2C%20your%20uvula%20may%20become,appointment%20with%20your%20healthcare%20provider.
While we wait, some other member may join the discussion and tell you of their experiences.
Do you think you could call your primary care physician tomorrow? Please let me know!

YES!! my primary doctor has NO clue. Everytime I have a SS flare-up my uvula becomes sore, swollen, hangs down like a translucent blob, burns and lasts about a week. And actually will be discussing this issue with a rheumatologist at Duke University next month to get her take on the issue. Will post on what is said later. What I have noticed in the past 20 years is a lack of investigative personalities in the medical field, so don't give up, change your doctor if necessary or look up the information on NIH and help to educate your primary care doctor with written information. I have found this to be helpful with my issues that I can't get them to listen to, understand, or care to figure it out. Don't just settle for, shove a pill in my hand and go away attitudes from the medical field. I believe they're all brainwashed by the drug companies nowadays.

@cprgrossman52 Welcome to Mayo Clinic Connect! It’s always a problem when the PP doesn’t know about something. But it’s not unusual. Autoimmune diseases are rarely known or recognized. But, I’m so glad you have an appointment with a rheumatologist! Ask if this doctor will take over the management of your SS.
What do you hope will come out of the appointment with the rheumatologist? What questions would you like to ask?

I’ve been saying the same thing for several years now,that I need Dr. House to try and diagnose me since no one seems to be able to.
Maybe some day he will come along!

@harley22 Great doctors do exist but they are usually in comprehensive medical centers or university medical centers. When I had an MRI to diagnose what I thought was a stroke, none of the radiologists knew what they were looking at. The neurologist thought it was either MS or Clippers (which I now have). My husband called the university hospital and had the films sent. They knew right away what the diagnosis was. To this day, I get my care from a doctor at the university.
These two organizations can help you find a doctor:
GARD, the genetic and rare disease organization. https://rarediseases.info.nih.gov/
NORD: the national organization for rare diseases. https://rarediseases.org/
In the meantime, this may help. https://autoimmune.org/resource-center/diagnosis-tips/
The article helps you organize your symptoms and problems so you can go to your appointment
With a clear focus. Will you try this? What is the main thing you want to focus on in an appointment?

Thank you for the info, I will look into what you sent further.

Don't rule out Oral Lichen Planus.

Check out lichen sclerosis with a dermatologist experienced in treating skin of the vulva.

Harley, do you have other autoimmune problems like asthma, eczema, allergies to some antibiotics? These things point to possible lichen sclerosis.

I have had a yeast infecion in my mouth and believe it has spread to my lips and to my nose. The dermatologist blew it off. I showed her pics of my lips when I wake-up full of white thick patches. It exends beyond my lips. My pulmonologist referred me to an ent. Two week wait for that appointment. I had to beg the pulmonologist for an anti-fungal. He finally gave me an oral rinse. This helped my mouth but my lips and nose remained unchanged. I informed my rheumatologist of all this and asked for something for my lips and nose. He suggested seeing the dermatologist. I was there from the start and she blew it of saying nothing. Why should I go back there?

Ended up going to a quick clinic. She prescribed dry/sta/lidoc that pharmacy mixed. This appears to be helping. Why did I have to see an urgent care clinic to get help? In the past 8 weeks I have an appointment with these professionals: Nephrologist, Rheumatologist, Cardiologist, Dermatologist, pulmonologist. Not one could help. I feel gaslight; no one listens. I really am sick of seeing medical professionals. My pc's did not listen when I was experiencing high amounts or protein in my urine. I had to be very firm and tell them my urine needed to be checked. Guess what? I have stage 1 ckd. I was not overreacting. Where do I go if this mouth rinses doesn't clear all up?

Thanks for listening.

Judy