← Return to Sjogren’s Syndrome – Introduce yourself and meet others

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@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I'd like to introduce you to a few other members who also have Sjogren's. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I'm confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG - why type of pain do you experience and what methods or treatment do you use to try to manage it?

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Replies to "Welcome to Connect @cmtg. You have landed in the right place. I'd like to introduce you..."

Hi @graveltruck,

Have you considered a cochlear implant? I thought I'd pass on some information from Mayo Clinic, that I was able to find:
http://mayocl.in/2fn2TZo
Do go to the 'Expert Answers' tab, as you will find a lot of information on this procedure.

I would also encourage you to connect with @ladyjane85. and @reneewise50, who seem to have found some solution for dry eyes.
Hope this helps.

I was not one who had anything re: dry eyes,,,...@ladyjane85

Hi,
My doc, is going to put "plugs" in the corner of my eyes to help keep them humid. I figure its worth a try, not a drug, ye!
Also have humidifyer witch makes a big diffenrence.

Thank you so much for clarifying, @ladyjane85.
I was viewing an older message from August 10, in the Chronic Pain group, where you wrote about having tubes put in near the tear ducts. You can find that discussion here:
http://mayocl.in/2fbxTuB

Would you be able to offer some insight to @graveltruck who has primary Sjorgen's, which can affect the eyes? Did it help putting in the tubes, and do you have to replace them?

@mayocl.in/2fbxTuB  and @kanaazpereira      I am so sorry - I forgot my former dry eyes. I have such other painful issues.  Yes, I had trial tubes put in the tear ducts and then the longer lasting ones, and they still are doing a good job. Cannot remember but think my optometrist, told me they would be good for a year. There  is no pain involved and you will tend to ask did he already put them in....   @ladyjane85

My Sjogrens seems to be getting worse. I use Restasis, Theramints, and drink gallons of water. We are discussing salivary gland plugs. Have a humidifier at night. I use fluoride toothpaste at night. Sometimes I have trouble swallowing. I'm taking Cimzia for Psoriatic arthritis.

have you tried Xylimelts? These tiny discs stick to your gums during the night and give SO much relief for dry mouth. They can be used during the day as well; but, I only need them to get a good night's sleep.

Dry mouth? I use Biotene mouth wash. It's formulated expressly for dry mouth. A quart lasts me about three months when I gargle with a teaspoon before retiring and whenever I get up to urinate.

i had plugs put in all 4 ducts. sorry to say: no relief however, restasis used twice a day helps somewhat. there is sort of an antibiotic in restasis that helps prevent infections because of the dry eyes. i have been on restasis for about 10 years now. i think the plugs might work if your dry eye problem is not to severe. trying to help.

I get plugs in my eyes every 3 months. They wear down & by the next of my next appt they are gone. I thought the plugs would be annoying. In reality I feel them at all.

I was diagnosed with Shogren's Syndrome last month via a inner lip biopsy. The surgeon said that he could tell when he made the initial incision that I have SS but he would send it to the lab as backup. The lab reports supported the surgeon.

It was a relief to get a diagnosis but frustrating because the treatment isn't a cure, just a handle of symptoms.