My rheumatologist is refusing to prescribe immune suppressants that she recognizes I need until I complete an inpatient week long vEEG for my neurologist. It was supposed to be this week but it got pushed back until May. I can’t handle my autoimmune symptoms. I feel like I’m dying every moment of every day. I’m desperate.

Sjogren's syndrome (SjS, SS)

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  • karinad


    I'm sorry to hear that! When you do get on pills, it's still going to take 3 months for the effects to kick in anyway, but there are some things that you can do for instant relief (depending on your symptoms). Changing your diet is one of them. Can you work with a dietitian? Make sure you get plenty of rest and avoid stress. Some supplements might help as well

  • karinad


    Make sure you're also using eye drops consistently, and that can include allergy eyedrops like Pataday. Using xylitol melts really helped me as well for my dry mouth and parotid pain.

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