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Sjögren’s Syndrome: how do you manage the symptoms?
Autoimmune Diseases | Last Active: Apr 10 8:16pm | Replies (158)Comment receiving replies
Forgot to mention how I cope:) I exercise 5-7 times a week. Initially I had to start very slow due to the POTS. Once I started on Plaquenil/exercise some of the joint pain subsided. I have resigned myself to living with some pain. I was using a humidifier until I saw a pulmonologist at National Jewish Health. Interstitial lung disease is a risk factor, so she said no humidifiers, hot tubs, birds, down clothing.....all that said you have to decide for yourself what you can live with and without. Sjogrens affects us all differently so partner with a knowledgeable doc and do the best you can:) My disease has progressed, and we are still trying to find a drug to slow it down. I had an infection in the fall of 2018 which started this autoimmune cascade (sjogrens plus other AA diseases). Before that time I did not have autoimmune disease or if I did it was subclinical and I was symptom free. For dry mouth I use products with xylitol in them and I have some for night and some for day. Dry lips I use products with lanolin. I use autologous eye drops and steroid drops in my eyes daily. I drink 2-3 liters of fluids daily. Take care with meds that make dryness worse, I stay away from fans, stay out of the heat, take meds daily, watch my diet, and exercise almost every day (gentle exercise).
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Can you please tell me what you use for your lips … nothing is working for me. Even ones suggested by mayo doctors. Thank you.
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It sounds like you've found a way to live with Sjogren's. Like most diseases, this is a disease that progresses. Your rheumatologist will help you watch for signs of extra-glandular manifestations. This is when Sjogren's moves into other parts of your body not just the moisture producing glands. A word of caution for readers of this post, don't panic, this happens to a small percentage of people with Sjogren's, I think it's less than 5%. I now have a Sjogren's related kidney disease, some heart manifestations and new pain in my cartilage and bones. I have scarring in a large part of my left lung from radiation treatment for breast cancer. Doctor's, during last year's check-up, initially thought that I had developed Interstitial lung disease but fortunately it is just scarring. For the small percentage of people with Sjogren's who are exhibiting extra-glandular manifestations lung disease is one of several risk factors. This is a good illustration of doctor's providing different advise based on the needs of the individual. I work with a pulmonary doctor who is monitoring my lungs. Since I'm living with compromised lung capacity, the use of the cool mist humidifier at night helps control the Sjogren's dry cough manifestation is the most difficult part of Sjogren's for me. Keeping my healthy lung moist helps stop the cough. I hope you find a solution to your new symptoms. It's frustrating monitoring new symptoms and looking for solutions but it sounds like you've created a good base of medical support and that's a big step.