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Sjogren’s Syndrome – Introduce yourself and meet others

Autoimmune Diseases | Last Active: Dec 3, 2023 | Replies (621)
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@beth60

Hi I’m Liz and I too have sjrogrens and I take Pilocarpine. I’m now up to 4 pills daily. For me it’s hard to remember the extra doses they added on. I was having a lot of trouble with the night pill. I found myself choking on my own saliva. It doesn’t work on me sometimes , I have a thirst that is unquentable ! I’m always so thirsty. Sometimes 8-10 pints of water and a lot of tea as well. The water bloats the heck out of me. Dry skin is so horrible it’s very flaky if I don’t slather something on constantly. Does anyone have any suggestions for a good cream to really moisturize my body. I suffer from Lupus, RA. and Hoshimotos. Dry eyes are also a painful problem impacting my vision, insurance won’t cover Rastasis and I’m allergic to the last one they had me try. Does anyone suffer from this with their Sjrogrens? Thanks for listening.

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Replies to "Hi I’m Liz and I too have sjrogrens and I take Pilocarpine. I’m now up to..."
elmay | @elmay | Jan 8, 2023

I use Cera Ve creams and Working Hands several times each day. They help.

I cannot take either of the 2 main meds to help produce saliva because they make me sweat
(big time!), so I am resigned to having a thermal mug of ice water on the nightstand. Some nights I drink from it almost every hour. That makes for a rather poor sleep.

My other challenge is Raynaud’s Disease. Ice cold fingers and toes make winter difficult, but I still walk everyday ( with crampons) and snow shoe as well. I have to limit the time to about 25 minutes
outdoors.

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