Patient Comments: Sjögren's Syndrome - Describe Your Experience

Please describe your experience with Sjögren's syndrome.

Published: July 21

I was diagnosed with Sjogren's syndrome due to dry mouth. I have some dry eyes, but it was the dry mouth that was the most uncomfortable. I have been taking Pilocarpine, which has made me feel almost normal until a couple of months ago. All of a sudden, my mouth went totally dry, my lips became swollen, cracked and bleeding. This is extremely difficult to deal with. I have seen two doctors and am waiting to see the rheumatologist. My sense of taste is distorted. I cannot tolerate any spice as it causes a strong burning sensation in my mouth. My mouth is very dry and has a burn in it almost all the time. The dryness is affecting my speech and the severely chapped lips are sore and embarrassing when they begin to bleed without any notice.

Was this comment helpful?Yes
Published: July 01

I was diagnosed three years ago with Sjogren's syndrome by a rheumatologist. I have never been a person who took medication until now. My doctor put me on Plaquenil to maintain inflammation, Evoxac three times a day for dry mouth, and Restasis eye drops twice a day. The Restasis takes at least 6 weeks until you still start feeling the relief from dry eyes. I also had tear duct plugs put in. I must say, my eyes are no longer red with pain, and my mouth has some relief. For once, I feel like a new person.

Was this comment helpful?Yes
Comment from: aw042634, 75 or over Female (Patient) Published: April 13

My eye doctor does serum eye drops for me. They are very helpful for the dry eyes from Sjogren's syndrome.

Was this comment helpful?Yes
Comment from: Sobeya F, 55-64 Female (Patient) Published: January 15

I have been diagnosed with Sjogren's syndrome since about 7 months. But, I have had this for some time I know. I get severe itching all over my body especially my arms. This itch is spreading all over my body.

Was this comment helpful?Yes
Comment from: af36, 45-54 Female (Patient) Published: October 22

I have been diagnosed with Sjogren's syndrome and on Plaquenil for about 6 weeks. I have developed anxiety attacks and need to know what is a good medication with mild side effects to treat the anxiety that will not cause worsen my condition (cause dry mouth). I am currently on Xanax and don't want to keep taking it.

Was this comment helpful?Yes
Comment from: anu, Female (Caregiver) Published: April 22

Five years ago I found myself facing this Sjogren's disease. It was very difficult, if I didn"t have the will power to live I could not have been cured so today I'm sensitive to other people with this problem.

Was this comment helpful?Yes
Comment from: Lyla, 65-74 Female (Patient) Published: March 26

I wonder if anyone has had problem with their hearing that may be caused by Sjogren's syndrome. I lost most of my hearing and with no hope for a remedy. It has changed my life to such a degree I hardly have any social life at all and I can"t handle any business I have over the phone.

Was this comment helpful?Yes
Comment from: SS Info, 45-54 Female (Patient) Published: February 26

I was originally diagnosed with primary Sjogren"s syndrome by a rheumatologist but went on to get another 2 autoimmune diseases. I presume this means I now have secondary Sjogren"s.

Was this comment helpful?Yes
Comment from: Dale, 55-64 Male (Patient) Published: December 09

I have advanced metastasized prostate cancer, which has gone outside the prostate, I also have CIDP (chronic inflammatory demyelinating polyneuropathy) and Sjogren's, and I am in pain all day and night long, my feet and legs feel like they are on fire, I am wondering if the prostate cancer has spread into the lymph nodes since they are outside the prostate.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

Sjögren's Syndrome - Symptoms and Signs Question: What symptoms and signs did you experience with Sjögren's syndrome?
Sjögren's Syndrome - Prognosis Question: What is the prognosis for your Sjögren's syndrome?
Sjögren's Syndrome - Treatment and Diet Question: What treatment has been effective for your Sjögren's syndrome? Have you made any dietary changes, and have they been effective in managing your Sjögren's syndrome?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.


Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

Health Solutions From Our Sponsors