Dear Sjogren's

Now while I wait for a "formal diagnosis" of lupus - and am now confirmed of sjogren's...after researching I still don't know what you are dear sjogren's. I know about the dry eyes and dry mouth but that's it. My Rheumy basically said we'll continue to check on lupus but you have sjogren's - do you have any questions. I'm like *yea what in the world is that*.

Can anyone enlighten me? Seems like everything sounds similar... I can only Google so much lol.

22 Replies

  • Hi I have had sjogrens for the past 8 years now you can have it own its own which is primary or with another auto disease. It's just like lupus same symptoms really joint pain fatigue rash dryness difficult in swallowing etc some doctors don't even know what it is you need to see a rhumy for treatment. Mine is now getting worse and I'm being treated as if I have lupus with different meds. My advice is to just do what you can rest when you can take the meds nothing else for it just one day at a time.

  • I felt a bit the same way about my sjogrens until I read Wallace's GRRRRREAT reference: The Sjogrens Book. It's now available on kindle too. I read chapters as & when different multisystem probs are flaring up &/or causing the extra bad trouble. Eg this year I studied how sjogrens affects the lower GI system + the eyes. Last year I studied sjogrens & the neuro cerebral system, the mouth, the urinary tract & the gyn dept. Basically, like lupus, sjogrens can affect the whole body...and, like lupus, the longer I've got active sjogrens, the more severe my multisystem probs. I'm 62, my lupus was diagnosed when I was an infant & my sjogrens symptoms became significant & widespread over 20 years ago.

    Hope something in there is useful to you

    🍀🍀🍀🍀 coco

  • Hello Barnclown ,

    i did search wallace's book but cant find it , is there any link u can share with me please ?

    thank u so much

  • Diagnosed around 2006 after an SLE diagnosis in 2005. My mouth was sticky, had ulcers recurring and needed to drink water/fluids with my meals to be able to swallow comfortably and I kept feeling out of sorts. Was referred from rheumatology dep to the dental hospital where they took a biopsy and confirmed Sjogrens, which they said meant I wasn't producing enough saliva, hence the difficulty in swallowing, the stickiness and dry lips. Was told its all part of immune system problems, seems they go hand in hand along with asthma which I have as well

    No cure and the pills (pilocarpine) they prescribed made me ill..that really upset me as they were brilliant at making the glands I'm back to drinking plenty of fluids as they said they had no other meds to offer. I have a mouthwash to help keep ulcers at bay and that works very well, wouldnt be without it. For dry eyes I have the water drops, my ears are dry too but I don't notice those so much, its the mouth thats the main bugbear. Hope that helps some xxx

  • Exactly: my rheumatology lupus & Vasculitis clinic won't give me pilocarpine because of my long standing Dysautonomia ....even though my multisystem long-time version of sjogrens is more active than my version of SLE. Am wishing you all the best hoping you'll keep us posted re any developments in you SS treatment plan 🍀🍀🍀🍀 coco

  • There is a leaflet on the Lupus UK website which explains it pretty well & can be downloaded for free.

  • You've already received some wonderful responses above. I have SLE and Sjogren's. Not sure which one is primary, but SLE dx came first, even tho blood work at the time showed Sjogren's autoantibodies.

    From what I understand, symptoms are very similar between the two BUT Sjogren's is primarily thought of as affecting any and all mucous areas, so eyes, mouth, nose, vagina, etc. For me, my eyes are the worst of it. I'm on Restasis and use eye drops daily/nightly. My dry eyes give me headaches. I also have to be careful of blocked meiobian glands (these are along the eyelid and keep the eye lubricated) and blepharitis (infection/inflammation of the eyelid). With Sjogren's the meiobian glands get blocked, causing irritation so I use warm compresses to loosen things up and then gentle massage along the lid to express the glands.

    Dry mouth for me isn't too bad but I do drink lots of water and use biotene products (mouth rinse and mouth gel).

    I'm on Plaquenil (hydroxychloroquine) 300 mg/day - split dose. I do not find that Plaq helps the dryness issues much but it does seem to keep other symptoms such as joint pain at bay.

    With either condition, you need to stay out of the sun, avoid trigger foods (different for everyone - time tells you which ones affect you), rest when you need to, don't overdo things, keep moving (exercise) and keep stress to a minimum.

    I'm also hypothyroid (most likely a result of my autoimmune disorders) and take levothyroxine. For me, when my thyroid levels are good, I feel good. When they are out of whack, my fatigue goes thru the roof, I feel sore all over, my brain doesn't quite work as it should, I can't sleep and I'm unable to do much. You learn to live with your limitations cuz if you don't, eventually your body crashes and forces you to rest.

    I was diagnosed two years ago and still don't quite feel like I have a good understanding of it all. With AI, you just don't know what each day will bring. Therefore, you have to take it as it comes.

    I hope this helps.

  • I have to see my GP on Monday as he says I may need levothyroxine. I was diagnosed by another GP in 2009 with hypothyroid, but I couldn't take levothyroxine because it contains lactose and I am allergic to it. It seems my thyroxine levels have improved and my TSH is lower even though I didn't take levothyroxine, so I am reluctant to take it with my allergy.

    It seems now I may have psoriasis after going to see my GP about a nail problem - another autoimmune disease with similar symptoms to Lupus: Red Patches of Skin; Thickened, Ridged Nails; Dry, Cracked Skin; Itchy, or Burning skin; Blisters, Scaling Spots; Bleeding Skin; Swollen Joints; Silver Looking Skin; Dry, Itchy Scalp to name just a few.

    I read that 'Although the inflammation from psoriasis is most visible on the skin, recent studies have shown that inflammation is present throughout the major organs of the body in people with psoriasis, even if they feel well. Not only can psoriasis lead to potentially permanent joint problems, but people with psoriasis are also at substantially increased risk of diabetes, heart disease, stroke, and depression.

    It is not yet clear how the severity of someone’s psoriasis affects these risks. There is some evidence that treating the psoriasis (especially with some of the newer medications) can lower these risks, although the data is early and the most rigorous types of studies have not been completed to answer this important question.'

    How they distinguish between all these autoimmune diseases, I really don't know, but what should be happening is finding out why we are suffering from all this!!!!

  • You can ask for a brand called Tirosint. It only contains 4 ingredients. From the website:

    "Tirosint is a unique brand of levothyroxine because it contains only 4 ingredients—levothyroxine, gelatin, glycerin, and water—and it is a gel cap, not a tablet. Most medications used to treat hypothyroidism are tablets. These 2 facts demonstrate that Tirosint does not contain sugars, dyes, alcohol, wheat starch (gluten), lactose, or many of the other additives used to make some thyroid medications."

    It's the only Levo I can take and it works well for me. You can read more about this medication here:

    It's expensive and I had to get prior authorization from my insurance company. I also got a discount card which essentially gets me 3 months worth for $105.00 US.

    So sorry you have psoriasis. Sounds horrible to deal with on top of everything else. Yes, it is imperative to find a knowledgable endo and a knowledgeable rheumy. You also need to learn as much as you can so you can ask the right questions, request the right tests, get the right treatment and essentially, fight for your health. Whenever I get pushback from a doc or specialist I love to use the phrase "what's the harm?" Works for me.

    I had to fight to get treated for UAT since my labs are "normal". Fortunately I found Dr. Blanchard who treats me based upon symptoms. He has saved my life. I also had to fight to get tested for AI. I looked "too healthy". I have a great GP who referred me to a rheumy and blood tests showed I had not one but two AI disorders.

    I know it's overwhelming and I had times I thought I was losing my mind (docs wanted to put me on antidepressants) but I had great support from my hubby. He goes to every appt with me.


  • Thanks, milkwoman, I will check it out.

    I know I have to be careful because I was diagnosed in 2002 with adrenal exhaustion after an unnecessary hysterectomy, 2 courses of a broadspectrum anti-biotic for a suspected yet unidentified infection that actually turned out to be 3 pieces of the internal dressing pack mesh stuck to my insides for six weeks after the pack was withdrawn following the surgery and many other toxic drugs including over dose on paracetamol for the pain in hospital.

    Coincidentally, or otherwise I received an email today with information on the thyroid and the endocrine system which I find very interesting especially with an appointment with my GP tomorrow to decide on medication. I think others on this site might like to read it, too:

    'Mitochondria - a wide range of r

    esponsibility from creating energy to determining the time of a cell’s death, having increasingly become the focus of chronic disease research.

    The keeper of our mitochondria is our thyroid hormone.

    This is why, when thyroid hormone is deficient or poorly functioning, patients experience an array of symptoms, including fatigue, constipation, hair loss, depression, foggy thinking, cold body temperature, low metabolism, and muscle aches.

    How much of what we call “mental illness” is actually thyroid-driven?

    To Reverse Pathology You Need a Whole Mind-Body Approach.

    Thyroid health is so much more than pumping out a hormonal product – it is a sophisticated conversation between the brain, gland, hormones, and the receiving cells and tissues.

    This circuitry is at the mercy of yet another hormone, cortisol 4 produced by your adrenal glands, signaled by your brain.

    This is why hypothyroidism can also look like anxiety, palpitations, insomnia, and sweating, and why one person may feel restored on thyroid hormone and another decimated.

    Once we ask about the state of adrenal function, we have to dig a step deeper and ask what is taxing the adrenals.

    From this point of inquiry, we are typically talking about gut, diet, and environmental immune provocation.

    This is the model of medicine that prizes root-causes; considerations like gluten enteropathy, sugar imbalance, fluoride toxicity, and iodine deficiency as potential drivers of thyroid hypofunction.

    The many lifestyle and environmental factors that can influence this relationship are prime examples of the web-like, whole mind-body approach that medicine must take in an effort to truly reverse pathology.

    Underdiagnoses and Mistreatment

    - When patients are tested for thyroid pathology, they are often confronted with “reference ranges.”

    Reference ranges that bracket lab results are based on unscreened and clinically unassessed populations (many were active hypothyroid patients), never calibrated for diagnostic practice.

    Doctors are trained to look at a brain hormone – TSH – as an absolute indicator of whether or not a patient is living in a glandular hormonal deficiency state.

    Dysfunction of the endocrine system at large is totally ignored by this metric that “diagnoses” only the lowest 2.5 percent of those in a given reference range, as hypothyroid, without looking at the whole picture of their hormone activity.

    There is also neglect for the significance of antibodies as a relevant indicator of endocrine/immune dynamics, and consideration of autoimmune drivers.

    For those who do receive the label of hypothyroid, they remain obliquely objectified by their lab work as their doctors use synthetic T4 – Synthroid – to attempt to move their TSH within range, more often leaving them symptomatic, but “treated” because of poor conversion to active thyroid hormone (T3) and suppression of natural T3 production because of their now lower TSH.'

  • It Is basically drying you from the inside out . Have it so bad it keep me consistently drinking water it feels like I can't quench my thirst I stay in my bottle water I drinking water like it's the last thing I'm ever going to get. Lol . It cramps up my joints in my hands and feet. I get cramps in my chest if don't stay hydrated. The meds that was given is pilocarpine and I take it 3 times a day. But all night I wake up to drink water.sleep what's that . Because if drinking a lot of water you going to get up several times to pee.

  • Try XYLIMELTS - on line from TheMouthUlcerShop - you pop one on your gum and they dissolve during the night and stop the mouth drying. I had no proper sleep for a year until last month when I started them - found them in the BSSA magazine. Worth joining BSSA. Honestly just buy one box to try, and you won't drink water all night and have disturbed sleep! Good luck Cas70

  • Am so frustrated: I can't take these cause I react to the active incredibly (an artificial sugar: xylitol) so anyone who tries this might do well to monitor their reactions cautiously...🤔🍀🍀🍀🍀

  • Hi Ratana21,

    Have you tried contacting the British Sjogrens Syndrome Association (BSSA) They also do a range of leaflets explaining the condition & the range of treatments available.

    The booklet "An advisory Guide about Sjogrens Syndrome for patients & doctors" is particularly good. Each section covers one system (eyes, mouth...etc.), is written by Drs specialising in the condition & ends with a list of medications used.It really helped me understand the condition.


  • Oh goodness welcome to my world and so many others'. Lupus and Sjog are both to do with the immune system working against you rather than for you. Sjog dries your body - so you have to drink constantly the more you drink the more you are less likely for it to damage internal organs. Your teeth need to be taken care of - use Colgate Duraphat 5000 (dentist only). Chew sugar free gum to keep mouth moist - you need saliva to stop decay. After a year of bad sleep due to dry nose and mouth I have found XYLIMELTS (on line from TheMouthUlcerShop ) stick one to your gum and it melts during night thus avoiding interrupted sleep thru dry throat.

    There is no cure - in a nutshell, you just have to learn to manage it all - I have found this website invaluable as is my membership of British Sjogrens Society Association - full of info and advice. I have improved incredibly since being put on Hydroxychloroquine - good luck. You will get great support at least from fellow sufferers. Cas70

  • I've found sugar free gum useful as well :)

  • Sorry to intrude on your post like this.

    My Dr. Suspected this for me too (plus Lupus and Raynaud's, waiting for rheumy appt.)

    I thought that Sjögren's was just the dry eyes, mouth and other places. I had no idea it can affect the body similar to lupus, so that's interesting to know.

    My (silly) question is:

    How does one pronounce Sjögren's ? Haha. I've only heard it being said once by my Dr. and I didn't really pay much attention to the pronunciation. All the other times I've just seen it written.

    I'm asking for future reference for my rheumy appt. I don't want to sound silly trying to pronounce it. That and also Raynaud's?

    Thanks :)

  • You pronounce it show - grans , I have been told by my GP and my daughter who is studying English language! As part of her degree the use of English in other cultures among other things !

  • Well I got a diagnosis is sjorgrens in the last 18 months , my legs a covered in a lupus rash but by the time I get to see rhummatoligst it will be gone , I have been shouted at by rhummatoligst I don't have lupus , but other consultants ie gastrologist, oral , gynaecologist have all said its floating in the back ground but rhummatoligst is insistent it's not , I went for second opinion last Tuesday and been told I have severe fibro I should see a dermatologist, and the hearing tests I had quote in quote were stupid I should of had a scan , and he the new rhummatoligst can see no reason why I am not on 400 mg of hydrochoquinne a day which would help ! Instead of the 200 mg the other rhummatoligst will only allow me to take , I see my GP on Monday and we will go from there , my GP thinks my rhummatoligst ( the old one is wrong ) but I feel just on the consultation I had I am going to ask if I can change consultant!

    I am so happy for you that your consultant has said he will keep watch for lupus for you , it is so good that you have an open minded dr who truly understands how stressful this all is for you !

    Gentle hugs

    Christina xx

  • Hi ya i was diagnosed in jan. Was put on hydroxychloroquine but got a blood clot. On codene & pregabalin. I get terrible Achy heavy arms / legs / Weakness & numbness muscles. Tingling arms & Sharp Electric shock type pain. Right rib pain wen i breathe Lump on right side of jaw. Lump under armpit. My rhumy is meant to be 1 of the best aparently but he says my symptoms are nothing to do with Sjogerns. (He specilaises in ss). 🤔I had rheumatoid arthritis wen i was younger. Im 33. But he is adament its not everyone says you just have to pace yourself & lookafter yourself more xx

  • Hello - I've come a bit late to this post. I have recently been diagnosed with primary Sjogren's five years after being diagnosed with RA. My rheumy says that he's fairly sure that Sjogren's was my first disease and a few others have added themselves in on top. I'm also hypothyroid.

    Everyone here keeps saying there's nothing to be done for SS apart from topical treatments - but I think it depends on which part of the syndrome you are most affected by. In my case the dry eyes and mouth are presently just about manageable with topical treatments but the impact on my peripheral nervous system plays havoc with me, as does the fatigue and dizziness as my tiny nerve fibres die off. It also affects my swallowing, sense of taste, gives me bowel and gynae problems, hoarseness with dry cough and swallowing is hard. I sip water constantly but am still dehydrated even in my blood test results.

    If it is confirmed that my main problems from Sjogren's are neurological, then I'm told I will be offered immunesuppression, probably Mycophenolate or perhaps, if it is shown to be progressing, the biologic infusion drug, Rituximab.

    So it really is a multisystem disease in its own right for some people and those with Sjogren's are at a significantly increased risk of developing lymphoma so this needs watching out for too. Like Lupus it can involve any of the major organs as well as the nerves and brain.

    Mine was confirmed by lip biopsy and I'm terrible dry everywhere - not just my eyes or mouth - always struggling to hold onto moisture like it's liquid gold! The treatments are the same as those for Lupus.

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