Sjögren's Syndrome - Stories from Patients Who Know

Patient Expert

Sjögren's Syndrome is a lesser-known disease which can occur alone or in patients who have rheumatoid arthritis. Several members of our community responded to the two previous posts I wrote regarding Sjögren's. Read their comments - Rheumatoid Arthritis and Sjögren's Syndrome as well as Sjögren's Syndrome: Common Tests for Diagnosis .

Since there doesn't seem to be much awareness or support for those living with Sjögren's, I wanted to ask our community members to share their stories. I am grateful and thrilled that PamelaO, Suz56, jujumom, and my friend Bubbie have contributed by answering the same ten questions.


Pamela was diagnosed with Sjögren's Syndrome last summer only months after being diagnosed with RA. She is confident that she had both diseases for at least four years but didn't receive either diagnosis until she got a second opinion. She also lives with fibromyalgia.

Pamela's first symptoms were dry eye and unbearable eye pain.

"I felt as if someone had filled my eyes with pepper seeds and poked me in the eye at the same time. The burning and eye pain was constant with no relief from OTC eye drops."

Her eye doctor tried placing eye plugs into the tear ducts to help sustain tear production. Then she was prescribed Restatis which took about a month to work but has helped substantially.

What are you doing to treat your Sjögren's Syndrome and/or any other autoimmune disease?

"I am currently on methotrexate 20 mg per week, prednisone daily and Mobic twice a day. I am doing pretty good, although not in complete remission yet. My eye pain and burning are pretty much at bay, for right now."

Pamela shares that she weaned herself off Restasis due to its costs, but does have some on hand as a back-up.

Finally, is there anything else which you would like to share with the community regarding Sjögren's Syndrome or living with chronic illness?

"Being diagnosed with RA is not something I would have ever wanted to hear. It took months for me to come to terms with those words, Rheumatoid Arthritis. The pain is unbearable and to suffer from SS makes things much worse. But I have finally gotten my health under control, thanks to my rheumatologist. I owe him my life. Not everyone with an autoimmune problem gets SS, but unfortunately I did. Coping with both can be very difficult, but with proper treatment you can improve your quality of life. I am living proof. Restasis will help with tear duct inflammation and bring you relief. At least your eyes wont be burning while your are trying to move around. Any amount of pain relief helps."


Diagnosed first with Sjögren's Syndrome in November 2006, Suz was diagnosed with RA in June 2007. Her journey began in March of '06 when she noticed having extreme dry mouth; then her eyes started to bother her.

What was it like getting diagnosed?

"I had to keep asking for more tests from my family doctor. At first he just said "oh its the weather or some med you are taking" (I was not on any meds) I'm very in tune to my body and knew something wasn't right... so I just kept pushing for more tests. They finally took a biopsy from my lower lip, although this came back inconclusive twice, my Rheumy was confident that I did indeed have Primary Sjögren's."

What are you doing to treat your Sjögren's Syndrome and/or any other autoimmune disease?

Suz reports very good results from using Enbrel and Methotrexate for her RA while she uses Restatis for her eyes. "[Restatis] has worked wonderfully for me... most times I forget I have dry eyes. My opthalmologist has seen a slight improvement in the dryness and most importantly no additional damage." However, Suz still has dry mouth which she's learned to live with, although, it has been hard.

What advice would you give to other patients who are concerned that they may also have Sjögren's Syndrome?

"Be proactive and keep pushing until you get your answers."

Suz says, "I try to keep my activities as they were before my diagnosis... exercise, eat well and, most importantly, stay positive :) This forum has also been one of the best things I've found in living with a chronic illness!"


"In the beginning of it all, my doctor thought that I had Lupus. I was only 22 when I went in for RA symptoms." Jujumom has Sjögren's Syndrome and Rheumatoid Arthritis. She reports having SS for at least 10 years, maybe even 15 years.

What was it like getting diagnosed?

"My doc would ask me at each visit if I had a dry mouth, I thought that was weird. After seeing him for a number of years for RA he would ask and one day I said yes I do have a dry mouth. Then I started to notice that my eyes were quite dry. I got plugs put in for that, it helps some. I have had sinus surgery thinking that it would help my sinuses."

What are you doing to treat your Sjögren's Syndrome and/or any other autoimmune disease?

For her current symptoms of dry eyes and dry mouth, Jujumom uses chewing gum or water, has eye plugs, and uses FreshKote eye drops. Her sinuses get dried out, leading to infection which in turn leads to asthma, so she rinses her sinuses often with saline.

Jujumom has used several drugs over the years for her RA (since 1979), including aspirin, motrin, and naprosyn before developing nodules on her hands. Then she successfully used plaquenil for about 18 years until it damaged her eyes (maculas). She injected methotrexate for one year but now uses the oral pills instead. Jujumom takes supplements prescribed by a Naturopathic doctor, including Bromelain to tackle inflammation.

Any final thoughts?

"Keep your chin up. If you can find someone to talk to that can relate to what you're going through, it's much easier. I wish this Web site was available for me 30 years ago. Of course there was no such thing then."


Bubbie was diagnosed with Sjögren's Syndrome just last year after five years of being treated for multiple sclerosis while having increasingly intense symptoms. Her initial SS symptoms included joint pain so severe that it seemed out of the ordinary, on top of typical MS-related nerve pain. Bloodwork showed the presence of other autoimmune diseases and she later had a lip biopsy, which was "not as bad as it sounds."

Do you have any other autoimmune diseases?

"Clinically they say I still have MS although the rheumy believes that the Sjögren's infiltrated the CNS and caused the "MS lesions." I have also tested positive for Lupus, Vasculitis and Mixed Connective Tissue Disease. To me it seems like it's just one big overlapping autoimmune soup."

What are you doing to treat your Sjögren's Syndrome and/or any other autoimmune disease?

"Methotrexate injections were hell, worse than interferons for me. But when that was over, I seemed to "reboot" back to a comfortable new norm. The addition of daily Plaquenil is what I believe is helping keep the status quo." Bubbie also reports using Restatis.

What advice do you have?

"Work on your body/mind/spirit connection. You have to get outside yourself and not dwell on the illness and your limitations."

Any final thoughts?

"Sjögrens can be quite more involved than just dryness of the skin, eyes and mouth. There have been many who were first dx'd with MS only to find out they had Primary Sjögrens CNS. Anyway, it doesn't matter what they or you call it. Autoimmunity can wreak havoc. Do what you can to control it, and go and live your life."