Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Comment from: Tamara, 45-54 Female (Patient) Published: May 28

I have been diagnosed with UCTD (undifferentiated connective tissue disease)/lupus/Sjogren's syndrome. Just recently I was told it is Sjogren's. I have so many things going on but I will say I use products for dry mouth, spray and Xylitol for nasal, Restasis and other medicines. It is very overwhelming. I hope that we all get more knowledge and relief for what we are going through.

Was this comment helpful?Yes
Comment from: Schavonne, 45-54 Female (Patient) Published: February 25

When I was first diagnosed with Sjogren's syndrome I was 40 years old but I'm sure that I had it for over 10 years because I was diagnosed as rheumatoid back then. I had terrible joint pain, dry eyes, dental problems, GERD, hair loss and skin and nail problems. I've had the salivary glands swelling and they still feel achy in cold weather. I use saline nasal spray for dry nose. I've taken so much medicine for this and for that, Plaquenil being one. I don't know if they at all helped, I still felt awful. Spiritual help is good for healing, my mind is in a better place. I use eye drops a lot and I use probiotics and a lot of my skin problems cleared up. I changed my diet, I now eat foods that don't hurt my stomach and that helps my joints. I didn't realize what I could be eating could cause joint pain. Sad about my eyes but I'm not giving up. I found that it's important to balance the bacteria in my body, it helps to feel better.

Was this comment helpful?Yes
Comment from: Kathy, 45-54 Female (Patient) Published: February 19

I have Sjogren's syndrome, bipolar disorder, thyroid disorder, IBS (irritable bowel syndrome), hearing impairment, and sciatic problems. I suffer with severe dry eyes, dry nose, dry mouth, headaches, dental problems, continuous mouth infections, bowel problems, fatigue and joint pain. I am still waiting to see a specialist.

Was this comment helpful?Yes
Comment from: Berta, Female (Patient) Published: February 17

I was diagnosed with Sjogren's syndrome 5 years ago. I have dry mouth and dry eye, and use Refresh Plus. I would like to know if anyone has experienced internal numbness, I was sick last year and had numbness for 4 months, like the dentist shot Novocain, through my whole body. And the doctors couldn't/can't figure it out, and I'm experiencing it again right now as I type this, and I just had the flu. Last year I had pneumonia, and after taking the medicines, the numbness set in, and I couldn't eat or drink for 4 months, the numbness came and went. This is scary.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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!

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

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?

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.