I have rheumatoid arthritis which is a cousin disease to yours. I was on Enbrel injections from 2004 until 2011. Now I am in remission. Be sure and read up as much as you can so you can make informed decisions about your care. Mine affects joints and internal organs so I carefully see my specialist every year. There are wonderful meds now for autoimmune diseases. My thoughts and prayers are with you.


SQ

Jan, I am praying for you. Please let us know how you do when your treatment starts. It's good to have a diagnosis at least you can prepare for battle. Hugs

Bummer! I am so sorry to hear this. I hope it is not painful. Call me if I can do anything. Hugs

Yes, I have it, as well as Lupus and Fibromyalgia. Liquid tears help the eyes and there is a mouthwash that helps with the mouth. If you have dentures you will have a lot of hot spots under your dentures. Anbasol helps. The nose, I have not found to much, I do use a lot of vicks in my nose, but Vaseline might work just as well. Make sure you get plenty of sleep, even if you have to take meds to do it. Your body can not heal without sleep. You only have one right now, take good care of yourself because you don't want anymore autoimmune responses.

my daughter as it and Lupus and the past was in hospital in Cape Town and know is Neuro SLE (Lupus) believe me it is a battle every day of her life and she is only 30 came next month

You are in my prayers.

So sorry to hear this...take care of yourself and get lots of rest...you are in my thoughts and prayers...

Dear Jan - So terribly sorry to read your post. You already have so much on your plate. Please look after yourself and try and get plenty of rest. Love and hugs Sarah.

Jan, take care & follow your doctor's advise! From the posts below, looks like there's some good suggestions. Praying it goes into remission very quickly!

So sorry, I am not familiar at all. Please tell us symptoms and more. we are here for each other! Kay

I went to the Ear Nose Throat doctor because i knew my sinuses were messed up. I choke on my own thick saliva, and I think there is drainage back there. He said I had a lot of malformations inside my nose. So, I had that surgery, and now it is cavernous in there - LOL. He also thought I might have this Sjorgren's so he also did a biopsy of the salivary glands in my lower lip to determine that. I wasn't really surprised, but kind of, when that came back positive. I have a lot to learn. All I do know, is I've had these symptoms for a long, long time. I'm hoping I'll learn how to manage all this dryness throughout my body. Thanks for all your concern and prayers.

Sorry Jan to read of this syndrome. I've just been reading all the information on the internet about it. Please take care and listen to your doctor's advice. Good luck with all of the medications available for you. Love Chris

I'm sorry to hear that, I'm not familiar with it either, I imagine in the winter it's worse with low humidity? I hope and pray the solutions offered will keep symptoms as comfortable as possible. Sharon

Sorry to hear that you have this disease. I have dry eyes and dry mouth too, so I understand you. From the test done, the Sjogren's Syndrome has been excluded, still it's uncomfortable, especially when you wake up in the morning with your mouth dry. I keep a small bottle of water on the floor near my side of the bed and take a sip or two whenever I need it, and that helps until I get up from the bed. Also I use Biotene products like Biotene Dry Mouth Gum, and mouth wash.
Wish you all the best,
Hugs, Lidia

Sorry that you have this desease.
About the dry mouth though Honey and Ginger Tea are good before bedtime. Both the ginger and honey have antiseptic and soothing properties.Thought it may be helpful.
Hugs and feel better soon.
Bev

Oh, Jan, so sorry to hear of this disease you have.......I also have dry mouth and desert dry eyes but didn't know it could be from a syndrome.... I blame mine on aging and allergy meds.......hopefully you can get some relief quickly.....hugs to you.....

never heard of it but my eyes are really dry and i am to use natural tear eye drops as often as i think of it .Getting old sucks:(:(

So sorry you are unwell and I will pray for your recovery, Take it one day at a time and do lie down if you are feeling tired. This is the first time I have heard of the disease. Hugs

Dear Jan, You are in my prayers dear friend!

Stay Strong!... flowers to all.