Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Comment from: Delayne, 75 or over Female (Patient) Published: August 21

I have had Sjogren's syndrome for 21 years and have suffered the minor and major aspects including cancer in my right parotid followed with radiation, but I got cancer again. The left-side parotid was removed in 1981. It is a very difficult disease to handle. I used to belong to a support group in Phoenix that was helpful. However, I've moved to North Dakota and haven't been able to find one I like.

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Comment from: 55-64 Female (Patient) Published: August 15

I can't believe I have it. I'm so fatigued I have trouble concentrating. I get very dizzy. I am so over heated at 70F that the sweat runs from me. I never used to sweat. I have trouble sleeping because I ache all over and because I'm so hot. The bed feels like it is on fire where I have been laying. My jaw hurts on the left side. It is hard to bring my back teeth together. One leg aches continually. I ache from head to toe. My mouth isn't really dry and my eyes aren't dry. It seems my throat is however. I get so desperate for a drink of water sometimes, I'm almost frantic. I get a prickly feeling in my chest and have to guzzle water or some juice. Please tell me if the doctor is on the right track.

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Published: July 28

I was diagnosed with Sjogren's syndrome about 13 years ago through having an eye test. At that time my main symptoms were dry eyes and mouth which, although causing major discomfort and loss of confidence were 'manageable'. I did not use medication instead I opted for good dental care, chewing gum, plenty of water and a hot flannel held over my eyes to 'ease' the dryness. I find bright sunlight a huge problem. I would just like to alert others to other symptoms which can follow from this diagnosis. 5 years ago I had a 'lump' in the roof of my mouth - it was Non-Hodgkins Lymphoma which was treat (very successfully) with radiotherapy (not comfortable but effective). I have just been diagnosed with Vasculitis which is currently being treated with steroids. Let's hope they do the trick. It is a debilitating disease which is difficult to talk about but tell your friends and family exactly how it makes you feel and they will understand that sometimes you simply can't speak to them and won't want to show them your eyes. Dark glassed are a lifesaver!

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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.

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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.

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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.

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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.

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Patient Comments

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

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