Sjogren’s Syndrome – Introduce yourself and meet others

Look up Mary’s Magic Mouthwash in google. It’s a recipe you can show you physician to write a prescription. It will address the THRUSH, THE PAIN and irritation of Sjogrens. Unfortunate that it does not address the underlying cause of the dryness.

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.

Thank you so much. Thrush makes my mouth feel raw. I am still interested in finding out if anyone has a recommendation about the cough and thick mucus.

Yes, I would ask for the lip biopsy. That is the definitive text.

@susanh824 thanks so much for responding. I am trying to convince my drs to do this. They are hesitant because of my oral LP, and I understand that. Does anyone ever get any other weird changes in their body from Sjogren’s. For example, the inside of my nose just started to have the symptoms of “falling asleep” like when your arms or legs do. It’s a very weird sensation. Also happening in the same period of time, it feels like the muscle, not sure what to call it, of my inner elbow, knees, where arm and chest meet, bridge of nose, wrists, and opening my hands in the mornings have all started to become very uncomfortable and tight. This happened all of a sudden, all in the period of a couple days. My lips have gradually gotten more numb over 2 years and uncomfortable. They stopped feeling like they were on fire a couple months ago. Doctors just shrug their shoulders when I tell them amount my lips. Does any of this seem like it could be Sjogrens?

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.

@susanh824 thanks so much for responding. I am trying to convince my drs to do this. They are hesitant because of my oral LP, and I understand that. Does anyone ever get any other weird changes in their body from Sjogren’s. For example, the inside of my nose just started to have the symptoms of “falling asleep” like when your arms or legs do. It’s a very weird sensation. Also happening in the same period of time, it feels like the muscle, not sure what to call it, of my inner elbow, knees, where arm and chest meet, bridge of nose, wrists, and opening my hands in the mornings have all started to become very uncomfortable and tight. This happened all of a sudden, all in the period of a couple days. My lips have gradually gotten more numb over 2 years and uncomfortable. They stopped feeling like they were on fire a couple months ago. Doctors just shrug their shoulders when I tell them amount my lips. Does any of this seem like it could be Sjogrens?

Have you tried over the counter Biotene? Comes in mouthwash , toothpaste and a mouth spray. I sometimes get dry mouth. Comes on suddenly I had tested slightly positive for lupus and Sjogrens at neuro and negative at rheumatologist. I think when you have are in the midst of an outbreak you show positive.

Have you tried over the counter Biotene? Comes in mouthwash , toothpaste and a mouth spray. I sometimes get dry mouth. Comes on suddenly I had tested slightly positive for lupus and Sjogrens at neuro and negative at rheumatologist. I think when you have are in the midst of an outbreak you show positive.

I tried the OTC stuff but it didn’t help. Although I haven’t tied the toothpaste. It seems like I’m always in a flare up, mine has gotten now annoying since Covid. Suffered the loss of 4 family members passing ( not Covid) then 3 dogs. I’ve not been the same especially after my brother my best friend and longest love of my life.