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Sjogren's Syndrome

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  • c89363 2
  • jacqueline00180 3

    lip biopdy

    Hi can you tell me to to prepare for a lip biopsy and what to expect, I have heard so many different things . I wrote last year saying I had dry eyes no tears dry mouth dry nose fatigue joint pains  vaginal problems low grade fevers oestioarthritis some saliva then  very little. I recently has a scan...

    7 replies 1 vote Last reply
  • lisalisa67 6

    Hard to be hopeful..

    im too new to all this. It came out of nowhere. First sinus, then dry eyes then what seems like horrid tmj with wackey ear issues. All since decemeber. I was guided to see thenRA and he said i had sicca syndrome and raynaruds and some other glitches. Nothing positive in many of the tests. Just a very...

    20 replies 1 vote Last reply
  • millie1202 2

    Sjogrens Symptoms-Shortness of Breath

    Hi. I tested positive not too long ago for Sjogrens. I had a very low score (1.8- Ssb). However, my symptoms dont seem mild. Has anyone experienced shortness of breath? I have the dry eyes and mouth, along with Fatigue, numbness, but I dont see much shortness of breath from other ppl who write...

    12 replies 0 votes Last reply
  • shirley43769 2

    Possible Sjorgens????

    Hi all I am new here and just looking for someone that is maybe in the same boat. I will start at the start! I went for a routine eye test in September 2016 and while waiting for my fairly weak prescription glasses to come home I noticed my eyes were twitching a bit and wanting to close, I put this down...

    57 replies 2 votes Last reply
  • lizeth 42044 1

    Just diagnosed with SS this past Friday, where do I go from here?!?

    Hello, I recently got diagnosed with primary SS(the rheumatologist thinks I might have lupus as well and we're just waiting for test results) and inflammatory polyarthritis. He prescribed prednisone, folic acid, and methotrexate and told me to come back in a month. I'm only 27 and a single mom with 3...

    5 replies 2 votes Last reply
  • stokeblue 2

    Not sure if SS ... any advice appreciated

    Hi. I've not been diagnosed with SS or anything else yet. My appointment with max fax clinic has finally come through for next month. My Dr just suspects I have it. So .... It all started last August 2016 with my optician saying I had blepharitis in my eyes. My facial redness got so much worse too. Then...

    6 replies 1 vote Last reply
  • dianne12100 1

    I'm new to this discussion group

    I have had symptoms of sjogrens for past two years. I have been to multiple doctors, for dry eyes, mouth, dry skin, cracked lips, chronic fatigue, anxiety, depression, stomach issues, insomnia and hair falling out. I went to a rheumatologist and all my test came out good. My rheumatologist referred...

    17 replies 1 vote Last reply
  • Jasflower 2
  • estelle44124 3

    Runny nose

    Just a quick enquiry. Is a runny nose feeling a symptom in SS. No actual cold, bug just a slight 'drip' feeling.

    3 replies 0 votes Last reply
  • triciaw 1
  • pauline61273 2

    Sjogrens Syndrome help 😖

    Hi, anyone out there with SS who can help with symptoms.  I look really well, but I'm really suffering with the many symptoms I've got.  I have seronegative secondary Sjogrens on the back of ulcerative colitis.  Dry eyes, dry moth, dry skin, itching and rashes, dry nose, aching ... the list goes on....

    8 replies 0 votes Last reply
  • jeniferpg 2

    Sjogren's and neuropathy

    I've just been diagnosed with Sjogren's from a lip biopsy that the ENT did. My Rheum says it explains nearly everything else I have: Neuropathy Small Fiber Neuropathy Restless legs Dry Cough Dry eyes Dry mouth Dental decay Taste changes Muscle pain and weakness Enlarged Parotid glands for three months...

    25 replies 2 votes Last reply
  • Mikki1220 2

    Sjogrens Causing Brittle Nails

    Not sure if it is the meds or the Sjogrens but I had beautiful long nails that I gel'd every 2 weeks when suddenly my nails hurt to the touch.  After having the gel removed you can see red inflammation underneath my nails.  Now they are extremely short and yet still weak and keep cracking.  Doctor says...

    21 replies 2 votes Last reply
  • el721 2

    Newly diagnosed with Sjogrens, depressed

    Hello al I am 54 year old woman and recently diagnosed I,ve been undergoing tests (bloodwork, CT scans, etc..) for a few months now. Finally saw a Rhuematologist a few weeks ago and she's certain I have it. waiting for results to confirm. ​I have been feeling numb emotionally all this time but things...

    9 replies 2 votes Last reply
  • zeet 2

    Sjogren's & Diabetes

    I was diagnosed with Sjogren's some 25 years ago and recently i have been informed that I am prediabetic.Has anybody else had this exact diagnosis and what was the outcome/

    1 reply 1 vote Last reply
  • lia23756 2
  • lisa2648 1

    Sjögren's syndrome question

    Does anyone else have trouble swallowing or choking? My Rhematologist said that it wasn't from my Sjogrens and to have it checked with a Gastro doctor.

    7 replies 0 votes Last reply
  • Mikki1220 2

    Sjrogrens and Glaucoma

    Before being diagosed with Sjrogrens, I was having blurry vision.  Then in August of 2016 was diagnosed with Sjrogrens and seeing lots of doctors.  Last night was my eye visit and my doc told me I now have Glaucoma.  My right eye is worse than the left and gave me Lumigan drops.  So does anyone else...

    16 replies 1 vote Last reply
  • tj268 3

    More questions :)

    Hi all! I have some more questions and wondering if anyone has similar issues. The main thing is my back this time. It seems like it gets injured, actually feels painful whenever I do anything anymore. I just moved a lightweight bench 2 days ago and omg the pain. So I rested and the next day tried to...

    2 replies 1 vote Last reply
  • l61899 2

    Can this happen?

    For 9 yrs Ive had electric shock type pains jumping around my body, muscle cramps, muscle twitches, rashes, and chronic inflammation of my pancreas. I have occiptal neurolgia too. All my AI tests come back clear but my dr has suspected either sjrogrens or limited sclerederma. My mouth only seems dry...

    12 replies 0 votes Last reply
  • Cloch47 3
  • Strikerlm 2

    Possible Sjogrem's

    Hello from Canada everyone, I am 51 yrs old. I still can't spell well but I'll try to spell check as much as possible. And my stories are long. 😊 I have been suffering since my 20's. My doctor blames everything on mental illness, hormones and now the aging process.  After finally getting to see a...

    12 replies 1 vote Last reply
  • tj268 3

    Anyone diabetic also..Toujeo??

    Hi, I am starting Toujeo next week and am wondering if any of you fellow SS sufferers are also diabetic and if so have you been on this newer drug/insulin? I was reading up on it and it says its number one side effect is dryness of mouth and pharynx...i need that like a hole in the head lol :D Going...

    1 reply 0 votes Last reply
  • tj268 3

    numbness and shocks

    Hello all! I was just wondering if anyone gets facial numbness and electric like shock pains? Lately my eyelid and cheek have been going numb (a couple times blurry vision) and I get electric like shocks again on my face, legs, arms ,trunk and now my toes. I had nasal surgery a few weeks ago due to Sjogren's...

    53 replies 1 vote Last reply
  • brenwag68 3

    Sjogren's Syndrome

    Hi, I am new on here, so I am not sure how this goes... I just came home from my rheumatologist "he's a new doc for me" I was diagnosed approximately 3 years ago as having Sjogren's but also possible other non specified autoimmune diseases. I have all of the symptoms of Sjogren's but also Lupus (Lupus...

    53 replies 2 votes Last reply
  • christina12418 2

    Pain in legs

    Started with pain in the back of my knees. Now it is all over. It feels like a muscle pulling tightly inside. Now it has become very painful and almost unbearable. I know Sjogren's can affect your nerves and muscles. Has anyone else experienced this?

    15 replies 1 vote Last reply
  • joanne50026 2
  • susan0217 2

    Bloodwork came back negative

    My doctor did bloodwork to check me for Sjogren's and of course it came back negative. I am so upset because I have every symptom of it. I just knew they were going to call & tell me they finally figured out what is wrong with me. What can I do if I have all the symptoms but bloodwork comes back negative...

    29 replies 2 votes Last reply
  • lia23756 2
  • gretchen37301 2

    Hair loss and scalp inflammation

    Hi. I have sjogrens as diagnosed by anti-ro (ssa) antibodies. I started having hair loss at the time I was diagnosed but my doctors seem a bit perplexed about whether it is related to Sjogren's, it has been falling out for 3 years-diffuse loss not patchy. I don't have lupus but I know they are related...

    10 replies 2 votes Last reply
  • marianb 2


    can anyone with sjogrens tell me if they have experienced a metallic taste with sjogrens?  

    6 replies 0 votes Last reply
  • kimberley 89054 2

    Sjogrens and Injury

    Hi there. I have had sjogrens for 4years now, and worst symptom is dry mouth. I use pilocarpine regularly and it seems to help. Recently I had a very traumatic injury to my hand involving a kitchen blender and my world has just stopped. I've been told I willbe okay eventually and am resting etc. I am...

    6 replies 2 votes Last reply
  • mandy95 3

    Sjorgrens and Ikervis eye drops

    Has anyone had any experience using Ikervis eye drops (Ciclosporin).  They are to be used at night time only.  My eye Dr has just prescribed these for me to try as he was just at a Sjorgrens seminar and these are currently being recommended for Sjorgrens suffers.  Any advise appreciated. regards, mandy

    13 replies 1 vote Last reply
  • Cowgirl918 3

    Occular Migraines-I can see the light but nothing else.

    I starting to feel a little like the latest version of the Merck Medical Dictionary. Doctors are now attaching labels to every symptom after so many years of "It's just ideopathic". My most recent experience this week was losing my vision in one eye for an hour or so. I had white spots of frosted glass...

    18 replies 1 vote Last reply
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