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Sjogrens/Inflammation/Uvulitis

Posted by gracenad @gracenad, May 16, 2023

DOES ANYONE GET INFLAMMED UVULA AND ATTRIBUTE IT TO SJOGRENS? I have had Sjogren's since 1994, one thing that has occurred that I cannot convince my (present) MD of is that when I get an issue with inflammation in my eyes and need to take a steroid, I also on occasion get inflammation on my uvula, very red and swollen, drags on my tongue with great soarness in that area not down my throat; it also gets little white bumps. I have been given prednisone in the past and it works to clear it up. New MD would not give it to me because she does not believe Sjogrens can cause Uvulitis, I had to go to a walk in clinic to get RX, and it is working. Anyone have this issue? Grace

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jkm54 | @jkm54 | Mar 16 2:57pm
In reply to @cprgrossman52 "YES!! my primary doctor has NO clue. Everytime I have a SS flare-up my uvula becomes..." + (show)
@cprgrossman52

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.

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sorry you have to go through this. I believe it is too common. Still waiting for a dx from rheumatologist. Think I am bugging them when relate new symptoms to help get a dx. Good luck to you! I believe in sending them info. It's funny? that the Dr who listen's the most and asks questions, is my PC. She has been practicing 3 years; fresh out of med school.

Judy

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jkm54 | @jkm54 | Mar 16 2:59pm
In reply to @becsbuddy "@harley22 Great doctors do exist but they are usually in comprehensive medical centers or university medical..." + (show)
@becsbuddy

@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?

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Thanks for the organizations you listed. Looking up immediately!

Judy

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Mshutch | @mshutch | Mar 16 6:03pm

I just discovered what a great resource the Sjogren's foundation is. I also have a great dentist. He has actually had patients with Sjogren's and scleroderma. Another good resource is podcasts called Sjogren's warriors. My rheumatologist only seems to think that the sjogrens affects my eyes, nose and mouth. Its great to connect with others who have experienced what I have.

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mom2204 | @mom2204 | Mar 18 5:09pm

They don't educated like they used to
#1. Listen to the patient. They have been there before.
2. The patient often knows or has a fear that need to be addressed if it sounds valid
Those fears can last a long time
Ihappened to have sjogrens and dry eye is not the only surface that is hot
Mucous membrane in general is vulnerable

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