Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren'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.

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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: 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.

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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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Comment from: Charlie, 35-44 Female (Patient) Published: August 20

I was diagnosed with Sjogren's 13 years ago after having strange symptoms. I had swollen eye lids, joint pain in one wrist and a rash on my back. At first just managed dry eyes. a

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Comment from: Pinky, 55-64 (Patient) Published: August 08

I too was diagnosed with Sjögren's after 25 years being told that I had fibromyalgia, which I do not have. So many Doctors so many medical bills and so much pain. I was wondering if anybody has ear tube problems with Sjögren's. I had my ear drained and now 30 days later the pressure came back I do not have any ear pain cold sinus infection or anything that could cause this problem. I was wondering if Sjögren's has anything to do with this I do have a dry nose but not bad slightly dry. My Doctor tells me that my Sjögren's got nothing to do with my ear problem but I read articles that Sjögren's can affect your ear/ears. The ENT Doctor wants to put a tube in my ear. I need to find an ENT Doctor that is familiar with Sjögren's.

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Comment from: Kaye J Qld Aust, 55-64 Female (Patient) Published: June 13

I asked my Specalist if a good naturopath could help me and his response was yes try it they are usually good with this type of thing. I had to tell him everything the specialist had me on. He then treated me and while I am on his tablets which to my understanding are fine minerals I am pretty much pain free. And listening to my body is the most helpful thing rest when your body tells you too. I have a high stress job which I have noticed most of the people on this site seem to have mentioned too. The naturopath has me on Duo Celloids one is PCIP (Potassium Chloride 65mg,Iron Phosphate 15mg and Sodium Phosphate-dibasic anhydrous 260mg, and Sodium sulfate-anhydrous 195mg) Two different tablets take one of each three times a day with meals . I am also on Phlaquinil twice daily . Took myself off Prednisone before the specialist told me too. Felt it wasn't doing anything anymore besides making me put on weight. Also 1 Krill oil in the morn 1000mg and 2000mg Fish Oil in the afternoon. Was better on 6000mg of fish oil but my stomach couldn't handle it, While I was on 6000mg I had no joint pain. Hope this helps someone else.

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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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