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Sjogren's Syndrome

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  • Diverticulosis and Sjogren's?

    Does anyone have any experience of the connection between SS and diverticulosis? I've done a bit of googling and see that diverticuli, particularly of the sigmoid colon, can be associated with connective tissue diseases. I've had SS for 23 years (diagnosed 13 years ago) and am currently in the...

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  • Fatigue in my arms

    When I try to describe this to anyone I only get suggestions of conditions or problems that I definitely don’t have such as Carpal Tunnel or other types of nerve entrapment.  I’m told I have quite an advanced small fibre neuropathy and ganglionopathy but these have never been confirmed by tears...

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  • Sjogren's and Methotrexate

    When I had my six monthly Rheumatology appointment at the beginning if this week, I was prepared for my daily dosage of Hydroxychloroquine being increased because they wanted to increase it six months before. I was reluctant then since I'd only been on the drug for 6 months and wanted to give...

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  • Looking for information / help

    Hi. I do not have sgodren’s but a family member does. Recently she has been losing a large amount of weight and is currently weak and I believe that her body is “eating” her muscle in order to survive. She has trouble swallowing and eats very little due to pain eating. Her diet is also heavily restricted...

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  • Could I have sjorgens ? Does anyone have these symptoms?

    Hi I'm hoping for some feedback as I'm at a loss as to what's wrong with me. A few weeks ago I developed a swelling in my neck just under my ear towards my jaw, 7 years ago I had a benign parotid tumour which was partially removed so I automatically panicked thinking it has come back....

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  • where next?

    6-8 mo. ago i started noticing a tingling in my upper lip. never thought much more about it until my tongue started getting so sore i could barely eat and noticed that my mouth was becoming quite dry. i had to have a couple of teeth pulled and thought maybe that was it. i am really worried about this....

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  • Dating with sjogrens

    Anyone here tried to date with this? I have been on and off dating someone and just heard from him again since my diagnosis. I am not sure if dating is a good idea and how to handle intimacy- if I am at increased risk? And how to explain my dried out mouth. Should I disclose what’s going on?  Just...

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  • Jaw & tooth pain

    Long story short: no, not having a heart attack today. Tooth & jaw agony apparently Sjogren's or lupus flare. Golly but I hope this goes away, and soon! It's not as painful as sinus surgery, but that's not saying much. Anybody else?

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  • Results of lip biopsy

    After years and years of searching for an answer, a person in a support group for chronic pain suggested I might have Sjogren's syndrome. So two weeks ago I finally got the lip biopsy done. And I was definitely not expecting the results that I got. The lab said that it was inconclusive. I had some...

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  • Experiences with plaquenil?

    I have been reading about plaquenil helping sjogrens but it seems to have a lot of side effects. I haven’t read where anyone felt it changed their life. Wondering if anyone has experience with taking it and their feedback on it? Thank you. 

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  • Newly diagnosed with sjogren’s

    So far- still have tears but reduced. Dry skin. Some saliva but dried out tongue and sometimes white coating. Some digestive issues.  Complete blood count and comprehensive metabolic panel normal but ANA positive. Don’t know what to expect and if people can live a normal life with this. On no meds...

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  • Pilocarpine and dry mouth with SS

    Hi there. I have been prescribed this 3 times a day by my rhumi cuz my dry mouth is so bad at the moment. Anyone taking/en this and can share experience? Any input would be most appreciated. Thank you!

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  • Eyes like sandhi

    Hi friends. Just need some support. I feel like s**t. Will it ever end? I feel like scooping my eye balls out with a spoon. I don’t feel sorry for myself as I know it could be much worse but I am having a hard time. How do you guys deal with this when you get flares? I’m pretty tough but having a really...

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  • Parotitis/dry mouth

    Hi. For the past 2 months I've been dealing with swelling/inflammation of the salivary glands along with extremely dry mouth. My eyes are dry but I wear contacts so not sure it's related. I also have a lot of heartburn, acid reflux. I've been to 3 drs so far and no conclusive diagnosis....

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  • Silva and restasis

    I was started on restasis for keratoconjunctivitis infection d/to chronic dry eye. Shortly after (2-3 months) I began noticing my saliva was reducing to nothing. Started seeing RA.M.D. Question, it really helped my eyes but my sinuses are open all the time now and I now have saliva (most of the time)....

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  • Sore on my tongue and stomach issues

    I was diagnosed with sjogrens 4 years ago.  I have had the usual problems, dry eyes, dry mouth, dry skin, etc.  But for abou 4 months I have had these sores on my tongues, and stomach issues.  I have been given an dental ointment that helps the tongue some and what my doctor calls a magic...

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  • Gout

    Hi just wondering if anyone suffers with gout and is it common with primary sjorgrens.

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  • More saliva production

    Good evening All, Hope you are all doing well tonight. I have not been diagnosed with Sjogrens and have had negative bloodwork for it and Sicca. I had been suffering from severe nasal, throat and mouth dryness after a septoplasty with elevaded inflammation levels. A few months later, I was producing...

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  • Does anyone with SS have bronchiectasis

    I have SS & called my daily clearing of my phlegm as “my morning cough”. I put it down to gunge settling overnight which lack of saliva hadn’t washed away. Lately, being breathless when walking briskly etc. and following a lung X-ray I am going to see a respiratory consultant to check for bronchiectasis....

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  • Eyelid swelling

    Hi all, new here and in need of help. I've just been diagnosed with Sjorgen's and my main complaint is eyelid swelling in one of my eyes that acts up every single day from the afternoon until I go to sleep. I've been to 5 eye docs already and they say that besides the dryness my...

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  • Sodium/salt effects

    I am curious.. Does anyone else with Sjogren's or SICCA have negative reactions to salty foods?  I have never heard it being mentioned here, but it is something that really affects me (increased dry mouth, bloating, etc).  I can barely eat regular foods anymore without feeling the salt...

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  • Need someone to talk to.

    I have not been diagnosed with sjogrens, but I have many symptoms associated with Sjogrens.  I have dry eyes, mouth, nose and vaginal dryness.  My ears do not produce wax anymore, my hair is dry and has been falling out, lost half my hair in the past year.  I have tinnitus, burning skin,...

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  • Kidney involvement.

    Just wondering for any of you who have extraglandular involvement of the kidneys associated with Sjögren's Syndrome, what were your initial symptoms? Was your diagnosis of tubulointerstitial nephritis a coincidental finding or were you having particular symptoms? Appreciate any feedback!

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  • What's happening?

     Nine days ago I awoke in the night with stomach pains. Over the next few days this progressed to nausea then severe gut pain. The severe gut pain at no point led to diarrhoea, which it normally would. On the second day I started to sleep for hours at a time during the day. This sleepiness has continued...

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  • I've been over producting of saliva

    Hello, I wanted to know if with SS you can get an abundance of saliva? I woke up this morning with less nasal congestion but as the dat progressed, i notice that i was overproducing saliva so much so that it is making me nausea. I don't take any saliva medication so I don't know what could've...

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  • I'm confused, need some input

    Long story short, I was diagnosed with cfs after over10years of trying to find out what is wrong. I can deal with the aches and pains, but the fatigue is debilitating. This weird brain thing where i cant talk right or remember thingI is enough to drive someone crazy. was on adderall, now 250 mg armondonifinl....

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  • Joint pain

    My rheumatologist and I believe I have Sjogren's syndrome. I had a test blood test several months ago that was negative, but I understand that having a negative blood test does not mean you don't have it. So in a couple of weeks I'm having my lip biopsied. For many years I've had dry...

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  • sjogrens with diabetes

    i feel really sick i have the sjogrens lip biopsy confirmed. iam a hypogycemic my eno ordered a gad test antibody and insulan antibody well it says i have a score of 5.0 and 4.0 postive for both now i wait for someone in my endocrnolgist to decide whats next its and i think its making me have to pee...

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  • 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...

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  • Sjogrens Syndrome Diet and Daily Exercise

    I am a 46 year Africa. American female who was diagnosed with Sjögren's Syndrome in December 2012. My systems are fatigue and achy joints and muscles.  I have started to experience dry mouth when I wake up in the. Or nine but not everyday.  I take plaqunill once a day and 15mg of presidzone....

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  • Need help

    February last year developed dryness. Had sinus issues. Ended at a RA full testing last april..and was negative for sjogrens. Tested positive for raynaurds, dry eyes and dry sinus  and A1c 5.7 and some borderline liver thing abr postive but borderline all else perfect. Never drank nor drink.  Only...

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