Has anyone been diagnosed with Sjogren’s after getting a negative antibody blood test? My dr told me I don’t have it but I have many of the symptoms (dry eyes and mouth, always thirsty, shoulder pain, pain under the ear/jaw, severe fatigue). I’ve read that a stool test and lip biopsy and can also be used to diagnose it, so I don’t think it should be ruled out just because of a blood test.
How did you get diagnosed with Sjögren’s syndrome? I’ve had dry, peeling lips for about 8 years now and very dry eyes and mouth for 2 years which is getting worse. My jaw joint also aches often. I know that i’m hydrated and it’s not due to medication. I’m going in for a blood test soon to check for antibodies. If this comes back negative I don’t think they will look into it anymore, which means I’ll have no answer for my symptoms.
Since I first started showing symptoms for Sjogren’s about 9 years ago, turns out it’s secondary to Anklosing spondylitis. My SS started with VERY swollen glands, it has now escalated to much more painful symptoms in the throat and under my tongue. It feels like pins and needles along with a tightness and unless I take prednisone this is a daily occurrence for me and it can be quite painful. My glands still swell but not as severe as early on and stay swollen much of the time. I’m currently taking hydroxychloroquine and l lueflonomide, and Cimzia,for the SS but really the only thing that seems to help is prednisone. I recently fractured a few bones in my foot and dr believes prednisone is the culprit. Please, if anyone has any suggestions I would truly appreciate it. Does anyone experience similar symptoms?
i was just officially diagnosed today and i feel so empowered. I'm 20 and have had debilitating fatigue and unexplained fevers for years. i have hope now! (and i now understand why contact lenses suck for me! lol)
Seeing a new rheumatologist tomorrow and I’m super nervous but excited (new doc = could be amazing or could be the opposite lol)! Any advice?
Has anyone gotten diagnosed with Sjögren’s Syndrome at a young age? I’m 22 years old and I also have Mixed Connective Tissue Disease. My maternal grandmother also has it. I just feel alone.
What are your syptoms with your Sjogren's? I have very dry eyes which I use Colidial Silver. I have a over production of saliva which makes me gag often. Any suggestions?
how has sjogrens affect you??
I've hit a stall in getting diagnosed. I have Sjogrens which means I have another auto immune disorder but don't know which one. I also have a lot of neurological symptoms. Does anyone have any advice? We're really struggling.
Has anyone else loss teeth because of SS? I am 45 and had to have all my teeth pulled. I have dentures right now and have a very low self esteem.
Has anyone had their taste/tastebuds completely changed by Sjorgens? I feel like my mouth is hyper sensitive to heat, spice, salt, sweet etc. it really makes eating anything with big flavor challenging.
Since Sjogrens is an autoimmune disorder that causes inflammations i wondered if eating an anti inflamatory gluten free diet will help with the symptoms? Also any ideas for treating dry eye due to Sjogrens.
Hi! Do you women with sjogren syndrome have problems using eye makeup, eye liner or eye lashes makeup? My eyes feel worst when i use makeup and I dont know if this happens because of the syndrome or is some allergic reaction to it…
Being 72 I have much fatigue and wonder is it old age or SS?
Hi everybody! I was recently diagnosed with sjogren syndrome and wanted to ask you which eye drops are helping you the most for your eyes? I use systane ultra but doesn’t seems to help me. Thank you!
Any about side effects of taking hydroxychloroquine for 14 years? I’d like to avoid retina problems if it’s possible so I take one pill, 200 mg daily, but was prescribed to take two pills per day. I’m thinking I’m doing OK but wonder if I’d have less severe dry eyes and mouth if I took two. Never have understood what potential problems of internal organs can come about because of Sjogrens.. Anyone knowledgeable about this?
I have a few questions... 1 - what made your doctor diagnose you? (symptoms, blood work, etc) 2 - does anyone here have a sjogrens diagnoses WITHOUT another autoimmune issue (Lupus, RA, etc)? 3 - anyone have chronic neck pain specifically?
Has anyone tried limiting dairy and gluten in their diet and noticed any positive effects on symptoms?
Other than meds, what are some steps I can take to manage my joint pain and stiffness?
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