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Sjogren's Syndrome

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  • Restasis multidose

    This might apply only to people in the US because I don't know if you have Restasis multi-dose in the UK or other countries. I am using Restasis multi-dose for the first time. I have used the kind that comes in daily vials before, so I'm not new to this drug just new to this version of …

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  • Sjogren's croaky voice comes and goes

    I've had an annoying dry cough for absolutely ages that was worse at night. However, since starting on Methotrexate I've noticed that has got much better, almost to the extent that it's pretty much vanished now. BUT in March, my asthma went wild and uncontrollable and at this time, my …

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  • Sjorgrens syndrome

    Hi all . I  received  a biospy of my salivary gland and it came back showing inflammation and lymphocytes in the gland which my doctor told me this may be sjorgrens . I also have a dry mouth and dry eyes. Since thenI have been having problems  with enlarge turbinate in the noise has …

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  • jaw pain and ear pain - any solutions?

    I've been suffering from sjogren's for 6 years now (firmly diagnosed). My symptoms have progressed over the years, from just fatigue and dry, to dizziness, occasional swollen on ankle or back of hands, now to frequent (almost constant) jaw pain, sensitive hearing and stiff neck and constant …

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  • Blink eye drops

    At my eye doctors request I began using a product in the US called Blink Gel Tears. I just started using it a couple of days ago and I'm noticing something happens whenever I use it. Right after I put them in my eyes my eyes feel very gritty and irritated. This doesn't last very long I …

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  • Help needed with interpreting blood results!

    Can anyone help me with my recent blood results? - ANA positive, homegenous fluorescence - Anti-dsANA titer 135 IU/ml (norm <20) - Anti-dsANA (immunoblotting) positive All other AI tests negative. I'm a former nurse but we weren't taught a lot about AI diseases when I trained >50 …

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  • Hits keep coming 2

    Hi all. I first want to thank you all for your kind comments after the death of my brother and many significant ones before.  I was diagnosed with mctd 1 and 1/2 years ago and ss as well, plus fibromyalgia; etc....I have run the gamut of symptoms in this very short time and most times I was …

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  • Stomach issues on top of stomach issues...

    Today I get the 2nd set of 5 results of scans done on my torso and I have a sinking suspicion that I will not have an answer to what the heck is going on. It's been an ongoing issue with my stomach for years but this past couple has been steadily worse. I have streamlined my diet until there is …

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  • Sjogren's sufferer - what blood group

    Hi, I'm new to this forum! I was finally diagnosed with Sjegren's only a year ago, however, I was diagnosed over 4 years ago with either Sarcadosis, Sjegren's, PBC for some reason were not conclusive. Understandably, due to the initial uncertainty of my condition I have begun to …

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  • LipiFlow Treatment

    My doctor recommended LipiFlow Treatment for my severe eye dryness due to Sjogren's Syndrome. This treatment cost $500.00 per eye. No insurance will cover this treatment. It's been almost two weeks since the LipiFlow treatment, and my eyes feel dryer than before this treatment. Has …

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  • long term disability for Sjogrens

    I’ve had multiple medical issues regarding my Sjogrens. I’ve been out on a leave for 3 months. I don’t foresee being able to go back anytime soon. Has anyone had any experience with long term disability? I saw it was listed as a disability, but I’m wondering if anyone has experience good/bad about …

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  • New Symptom!

    So I posted a few days ago about some of my symptoms and that my right side and hip were hurting. That finally subsided and I am feeling better. The new scary issue is that the past few nights I have woken up out of a deep sleep with my heart racing and when I sit up I get sweaty and feel like I …

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  • Swollen on both sides of my face

    Both sides of my face swell up. It’s off and on.  Have no idea what triggered it  very annoying not knowing what I would look like tomorrow.  Has  anyone have a solution  or medication that would help with the swelling?   Thanks

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  • The hits keep coming

    Hi all. This disease is truly awful. I’m just posting to remind us all to do our best to avoid stress at all costs. I just spoke at my brothers funeral mass and it really got my symptoms going again. I know things will get better but having no saliva in my mouth, virtually no tears in my eyes is …

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  • Are you having the same problems?

    I hate this disease. My eyes are so dry that it has had a serious impact on my eye sight. So I struggle to see, Mostly it has effected my close up and mid range sight like looking at my laptop when it's on my lap. I've had to stop taking Restasis because it was too expensive. That has made …

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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 …

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  • 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 …

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  • Ent

    Got an apointment on monday with ent .but i think i have something serious .horrible taste in my mouth and tongue going on 7 months had tonsilitus tonsil stones lung infection.but this mucos in my mouth will not go .proper scared

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  • Inflamed Salivary Gland

    I have been recently diagnosed with Sjogrens Syndrome- along with Hashimotos. I have had oral lichen planus (erosive) for the past 2 yrs .. my taste buds will sometimes become inflamed but now on one side of my lower mouth, my mandibular salivary gland is inflamed ( more on one side than …

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  • neuropathic eye pain

    Has anyone had neuropathic eye pain.  Symptoms are same as extreme dry dye.  I can't function anymore. What has been done.  I'm just in constant pain, burning and eyes want to close.  Any help appreciated

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  • Hydroxychloroquine (plaquenil) question

    I'm newly diagnosed with sjogren's and although I haven't been on the medication for long ( 2 weeks) I'm desperate to feel better. I came down with the flu 5 months ago and never recovered. I know it takes months to build up in your system but I'm terrified that it may not work …

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  • Submandubilar gland swelling

    About a year and a half ago my newborn son presented with neonatal lupus and they were able to trace it back to me through blood work. Through the blood work they told me that I tested pos for the Sjögren antibodies although I didn’t have any clinical symptoms at the time.  Fast forward …

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  • Start of the drug Cyclosporin.

    Hi all🤗 My Rheumy has just started me on Cyclosporin 150mg a day. I was wondering if any of you are on Cyclosporin and If so, how are you managing on this? Side effects etc. Thanks in advance. Seff. X

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  • Sjogrens Syndrome and bad breath. Help!

    I found out I had sjogrens last summer. One night, about two years ago a partner asked if I'd brushed my teeth. I told him, "Yes. Does my breath stink or something?" I had never had problems before and was surprised. It was one of many indicators (aside from swollen feet, feeling like …

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  • Not Sjogrens

    Thanks for allowing me to follow and read some of your situations.  I really thought after reading what people were talking about here that the doctors were going to find out what was wrong with me. The dry nose for me is the worst nuisance.  I have been dealing with the dry eyes since …

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  • GI Issue

    If you have GI issue as well as excessive thirst and your Sjogrens bloodwork and lip biopsy came back normal, I found a GI issue with the Ileocecal Valve. If you search the internet for Ileocecal Valve you will see some similar symptoms to Sjogrens.

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  • Dry mouth for 8 months! Could it be Sjogrens?

    I was wondering If i could ask anyone who has been diagnosed with Sjogrens a few questions regarding symptoms, diagnosis ect. I would really appreciate your help 😊 (sorry if this is a bit long!) I am a 21 year old female, I am not taking any medication what so ever, drink MASSES of water …

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  • A new insight into dry eyes...

    ...well, new for me, though I expect a lot of Sjogren's sufferers will know at least some of this already. As mentioned elsewhere, I'd seen two ophthalmologists in the past five months. One spent just five minutes examining my eyes visually, then told me I had normal tear production in …

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  • Lab test neg for sjogrens

    I too am like Susan. I have hashimotos, hypothyroiditis. I am beyond discouraged. I can't find the correct avenue to get help. I have no insurance but am being seen for my hashi and general health by a family practice group and Im on a grant I qualified for. I did, however, have to pay out of …

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  • Sjögren’s and fatigue help

    Hi I’m a 31 year old female I have just been diagnosed with Sjögren’s syndrome after going through loads of tests since November. My rheumy has started me on hydroxychloroquine only yesterday ( I know it can take weeks to help) but I am really struggling with fatigue I feel like all I do …

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  • Has anyone tried artemisinin for treatment?

    I have lived with hyperthyroidism for a few years. A couple of weeks ago my blood test came back and showed evaluated SSA, SSB and ANA (1:320). I went to see four different rheumatologists and they suspected I might have Sjogren Syndromes but cannot give me any medicine because I don't exhibit …

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  • At a loss

    I recently posted about my symptoms l had pins needles muscle cramps and twitching and very stiff leg muscles (spasicity) l was worried about ms but after seeing neurologist and having physical exam as well as brain and neck mri he can see no signs of MS thankfully. Rheumy tested me for fibro ie …

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