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What information are you still looking for?

Let us know what types of information you are still looking to learn more about when it comes to Sjögren's disease, or what questions you are looking to have answered.

  1. Hi Donna , no what I found for me with the hypergeusia is every day drinking very tart homemade lemonade , it calms down the nerves in my mouth . It's like a palate cleanser . For my lips they are so moist I use Burt's Bees , watermelon flavor , it's the one they tolerate , it coats them . For my eyes , I use OTC , Systane Ultra PF or Refresh Optic Gel Drops . My nose the sores/scabs , one is a med I got when in the hospital , it's Toothette Mouth Moisturizer - found I can order that from the company. Works great ! These help me so much ! I have lupus hair , if you want those tips , I'll give those too ! Thanks for asking me for my finds !

    1. , thank you for sharing them! Yes, that would be wonderful if you don't mind sharing! Several members in our young community have shared that they also have lupus, so any tips would be very much appreciated! I'm a very tart lemon water drinker as well, but no sweetener (T2D), and it helps keep me quenched. Does the Toothette require a prescription? - Warmly, Donna (Team Member)

  2. HI I'm Beverly . This disease has so many elements to it - it's hard to think of which is the worst part . I am so tired most of the time (I like the analogy of the spoons theory - I read about on the Lupus Site) , it so fits but then my eyes , nose and mouth , I have hypergeusia. With the hypergeusia, a lot of the time I don't mind because of the intensity of flavors and my love for cooking , but the eye part sucks big time , for a long time I thought my nose sores were my allergies and sinus issues . But not the same at all . I found things to help but . . .

    1. , Welcome, Beverly. we're glad you found us! The things you found that help, are they difficult to come by? - Warmly, Donna (Team Member)

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