Patient Comments: Sjögren's Syndrome - Describe Your Experience

Please describe your experience with Sjögren's syndrome.

Comment from: JP, 65-74 Female (Patient) Published: February 09

I was diagnosed with Sjogren's syndrome about 2 weeks ago, even though my rheumatologist told me I've had it for 4 years. I don't remember him telling me at all! I've got the dry mouth and eyes but at least no corneal ulcers. What I'm scared of now is the swelling of my legs, ankles and forearms. I read that there is a rare condition related to Sjogren's that can cause cirrhosis of the liver. I am so terrified my heart beats rapidly all the time. I am going through some really stressful things right now. Maybe that had an effect. I hope for all of us to at least be able to lead some kind of life. I know I should stay positive but right now it's very hard to do.

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Comment from: Faith, 55-64 Female (Patient) Published: December 26

I was diagnosed with Sjogren's syndrome about 5 years ago. Like many patients I have dry eyes and mouth. I've had terrible back pain in the past. After receiving a steroid shot I seem to have gone in a mini remission. I am thankful for the remission. Generally I try to eat extremely healthy, I have a NutriBullet which makes it easier to eat my fruits and vegetables. I use coconut oil on my skin especially before I shower. This makes my skin less dry and a lot less itchy. Some days are worse than others. I may try a vegetarian diet if I can find enough protein replacements.

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Comment from: Tinak, 55-64 Female (Patient) Published: December 05

I've had Sjogren's since 2002 with severe dry eyes and dry mouth. I also was diagnosed with Hashimoto's at the same time and was very sick. I've have punctum plugs, and been on Restasis from the onset due to the severity of eye dryness. However, for the past five years, my ophthalmologist sent me to get serum tears. That's where they draw vials of your own blood, spin the serum, and make tears. It has been a boon. I had to wear goggles due to the dryness, and now I don't. Although I still have to put OTC drops in, as well as night gel and Restasis, the serum tears are wonderful. I go every 3 to 4 months for blood draws. Evoxac has worked for my dry mouth, but lately I've had a serious flare up with increased dryness of the mouth and eyes as well as fatigue, lots of it. I hope that my symptoms will subside without further damage, but I don't know. I'm also seeing doctors for chronic cough with phlegm, an episode of laryngospasms which was terrifying, and severe silent reflux. Sjogren's has reared its ugly head, making life miserable. We all must take one day at a time and trust things will get better!

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Comment from: Mara, 65-74 Female (Patient) Published: October 07

I am now 75 but in 2008 I had viral pneumonia and was in the hospital for four days. I was active and enjoyed life until then. After returning home I was tired all of the time and had no energy. There were times that I would pass out or get dizzy and light headed when standing for too long. If I tried to do house work or something I would get short of breath and light headed and would have to sit down. My eyes do get dry to where I use Systane in them. My right salivary gland did swell to where I looked like I had the mumps there. My doctor pushed on it to show me that it would secrete, and my left one does not. I do not have dry mouth but am thirsty a lot. I was sent to a rheumatologist because my doctor thought I may have SLE, lupus. The rheumatologist didn't thinks so because I didn't have enough markers. This after all kinds of tests including heart. I have been chronically fatigued since the pneumonia and in April this year (2014) I developed skin lesions on my chest and back that went to my lower back and then my arms and legs, and they all itched. I was then sent to a dermatologist that did a battery of tests and thought I may have had an allergy to one of my newly prescribed medicines so she had me go off that and gave me some ointment to use on my spots and said to use Vaseline all over for my dry skin. After that she had some more blood work done and a biopsy of my skin. She told me after my labs came back that I had Sjogren's syndrome and said that she was going to start me on Plaquenil but to check with my eye doctor first. At least if this is indeed what the problem is I now know why I'm chronically fatigued.

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Comment from: Debsmith, 35-44 Female (Patient) Published: September 03

I was diagnosed with Sjogren's syndrome through blood tests a year ago at age 38. I had slightly irritated dry eyes but my biggest problems were the unfounded fatigue, flu-like feeling and achy joints. I am now on Plaquenil, taking many supplements and following a strict Paleo diet. The diet has made the biggest positive changes for me.

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Comment from: Sandie, 45-54 Female (Patient) Published: May 09

I was just diagnosed with Sjogren's officially today. All this joint pain and chronic fatigue for years, I felt like dying, didn"t care. Rheumatologist dismissed me as fibromyalgia only. Well, maybe if he at least took blood work the first time! I mean I've only been in pain for... twenty years! Recently I started getting the dry eyes, dry mouth, depression, passing out from pure exhaustion, but guess what? I now have a name for what I have and I am happy and relieved because I am going to fight for my long, bright future with my wonderful husband! I take Zoloft, Klonopin as needed, and Daypro Alta, no narcotics, no prednisone! I also use some oral and vaginal lubricants.

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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?

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