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Conditions

Sjögren’s Syndrome

Microsopic slide showing Sjögren’s Syndrome's cells

There are more than half a million sufferers of Sjögren’s Syndrome in the UK, but it’s a condition that you probably won’t have heard of. Named after the Swedish eye doctor, Henrich Sjögren, who described a ‘syndrome’ consisting of features that included: dry eyes, dry mouth, vaginal dryness and aches and pains; it is a non-life threatening condition that typically develops in women in their 30’s to 60’s, although it can develop at any age and affects both men and women. It occurs when the body’s immune system reacts against itself and destroys the mucous secreting glands (such as those producing saliva and tears) as if they were foreign bodies. Treatment is about managing symptoms and preventing or limiting organ damage. Artificial tears are used to ensure that the dry eyes remain healthy, while saliva substitutes, coming in the form of gels and mouth sprays, are used to alleviate the discomfort of a dry mouth and throat.

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I have recently been diagnosed with SS. I have lost the sences of smell and taste, has anyone else experienced this?





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i have fibromyalgia, raynaulds syndrome, and sjogrens syndrome, arthiritis. diagnosed by a rheaumatologist in 2006. today a doctor from the hospital,and you never see the same one,said i am not convinced that you have sjogrens, well i was took aback, i said i have it written in black and white, well now she wants to send me for a scan, and saliva tests, i dont understand has this ever happened to anyone, she said you were posotive, but your recent bloods came back negative.





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Hi there...I was diagnosed with an auto immune illness in 2007 while in MN & dr told me I had SLS or systemic sclerdoma. We moved to AZ & kept getting sick.Rheumatologist in AZ who told me I have Sjogrens Syndrome & Rayna id's syndrome. By the 3rd yr of living in AZ my dr suggested I move to a cooler climate. The allergens antigens & extreme heat were not conducive for me. Moved to Sioux Falls SD in 2014. Have had good/bad days. Am going to a Rheumatologist in Feb for some answers. In addition with SS one is prone to UTI along with Interstitial cystitis an inflammation of the bladder. Will seek advice from a Urologist next week as well hoping no cystoscopy will have to be performed. Dealing with SS is not easy which most people don't understand. Am allergic to almost everything out there in a catch 22 to alleviate my pain. Best I can do is take Tylenol. Will say living where the air quality is cleaner & not being so dry as AZ is beneficial. Good luck to everyone out there contending with this nasty illness. If you're not pleased with a dr....keep looking until you are. Diane

I have Sjogrens. I have had recurring bouts of upper respiratory infections- 4 bouts in 5 months.it isnt a chesty cough, my GP declared all was clear. It comes with a sore throat, so it's difficult to swallow & when i do its painful and it also hurts my ears. I also have a barking cough, which makes everyine look at me. I was told that it sounded as if i had croup! I do feel poorly for the first few days, then gradually feel better, But the cough stays with me for weeks. I noticed on the current bout, that i had a more than usually dry mouth all day, followed by my voice crackling, and then the cough etc.Having researched Sjogrens a bit, i found that recurring bouts of upper respiratory infections, can occur with Sjogrens. Has anyone else experienced this? Is there anything i can do to alleviate cough etc. I also have fibromyalgia, so I am already on heavy duty painkillers which affects whether i can take cough medicines. Help?





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Hi, can you buy Lacrisert in the UK? I really want to try them but cannot find out how I can hold of this product.





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Hi, I have just seen a second consultant for my sjogrens as the first was not helpful or informative at all, feel so much better now I have seen a new doctor, he gave me lots of useful pointers like drinking through a straw, getting stronger fluoride toothpaste from my dentist and sipping water frequently to help keep my teeth, also get a humidifier to help keep the airflow moist overnight, if you get no information or explanation, then, ask to be referred to another specialist I am so glad I did, I am lucky I have an amazing husband and family to support me, I have lots going on and don't know if it's all down to sjogrens but my family doctor who referred me in the first place says we will tick one box at a time and hopefully I will start to feel normal again, well as normal as can be, Janet.





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Hi, I have just been diagnosed with Sjögren's syndrome, dry itchy eyes, dry mouth, eyes sensitive to light, pain in all my joints and some swelling in my ankles and fingers, loss of feeling and tingling in all my fingers when cold, I am having bouts of diarrhoea, headaches and have piled on weight in the last few months, also have breathing problems when outside in the cold or if I get too hot inside, sleep pattern is not good and I am having day and night sweats, I feel so tired all the time and can't seem to take in names or numbers, ie, meet someone and walk away and can't remember there name, my speech is stuttering and I stop in mid sentence as I loose all train of thought, I also have rheumatoid arthritis, the specialist says I have a mild form of this syndrome, if my symptoms are mild I dread to think how bad this illness gets, I disagree with the mild comment completely, I have now also itchy ears, skin and scalp, does anyone know if this illness ever goes into remission at all, thank you, Janet





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it tends to abate for a while and then come back and so on. It's really important that you rest when the tiredness sets in and don't try to work through it as people might suggest and take pain relief regularly. Make sure your consultant knows everything and don't try to be brave. I hope you get some relief soon. If it's any consolation, you're not alone.I barely have the energy to hold my phone while I type this. Best of luck.

Hi Sarah, thank you so much for your reply, at least I now feel like someone understands me, feels like you are going mad, because we look normal nobody knows what's going on inside, I have felt like I have been hit by a train, there are so many sides to this horrible syndrome, I hope you have some release soon and send my best wishes Janet.

No I am afraid not. According to my consultant rheumatologist he has never seen it get significantly worse over time. Well what have you experienced over time if it's not got worse? Sometimes I think these people are idiots.

Janet: We could be twins as I have all the symptoms you mentioned, especially with the cold intolerance and sweats. I have been complaining for three years to three different physicians and they just ignore my complaints. Hot showers in middle of night help warm my cold clammy body and I sleep better when warm. I found a mask to wear in cold weather especially when exercising. Swimming has dramatically helped my immune system.

Hi Janet I have been diagnosed recently but really annoyed as I was told I has Fibromyalgia 10 years ago. I really cannot talk to anyone about it but your comments seem to be how I am. How are you feeling today my weight on my stomach has got bigger aches pains dry throat mouth. Best wishes .Gillian

Hi Gillian, I am not to bad at the moment thank you, I have recently had tests for a vitamin B12 deficiency so am now on a three month course of folic acid and have felt a little bit more energetic, nothing else has changed though, I find it shocking how little is known about sjogrens and it is so difficult to explain how I feel to anyone, I hope you are able to talk to someone about how you feel as it does help to get it off you chest, they may not understand you, but, at least you are talking about it, I wish you well and would say keep an eye on your blood as you go along, take care, Janet.

I have recently been diagnosed as having Sjogrens Syndrome after having a lip biopsy. I believe I have had this condition for a number of years. A severe virus in January last year caused my parotid glands to swell to mumps size. ENT for a whole year have maintained there is nothing wrong with me. I have suffered almost since the incident above from vertigo ranging from significant to nausea causing. Intense inner ear pain, itchy ears, dry mouth and deafness. It took six months for ENT to arrange a consultation with a rheumatologist who thought I might have Sjogren's and to have a biopsy. I then waited another 2 months to get an appointment back at ENT for what I thought would be a biopsy to discover it was an appointment to discuss the need for a biopsy. At this point my husband lost his cool and asked them what they were playing at. The consultant said OK we'll do the lip biopsy. Very painful and two weeks later I had another consultant look at my ears visually and tell me there was nothing wrong with them. The biopsy results told a different story. I have yet to meet with the rheumatologist for my next consultation, but I believe that I have Primary Sjogrens with Secondary Auto Immune Ear Disease and I have had Sjogrens since my late thirties when I was being diagnosed for chronic IBS Meneires and severe migraines. To complicate matters even more a dentist pulled my jaw out of alignment when removing my wisdom teeth in the same period. I am simply fed up with the lack of understanding between the different health specialisms that mean that some illnesses are never considered or treated that seriously.





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Sadly Sjogren's (Showgrens) Syndrome is the poor relation in the spectrum of diseases that come under rheumatology! A cynic might suggest a correlation - 90% of sufferers are female and the classic age for onset is 40 years. The path to diagnosis is fraught becasue many GPs are not familiar with it - despite it being so common. Some consultants rely on the lip biopsy which is only positive in around 70% of cases but some consultants take it as 99%. the fact is why risk this painful process which for a minority leads to ongoing pain and anyway removes a precious salivary gland 9when sufferers from sicca syndrome (dry membranes) need them all! Only the team at the QE Birmingham have addressed the need for a multidisciplinary clinic involving the specialists that may be needed to manage this incurable condition. It has been described as the most miserable of diseases and anti-depressives are a great help. When you do get the specialist advice and prescriptions that only consultants are allowed (eg for dry eyes the GP can prescribe Hypromellose drops but the Ocular consultant can prescribe the far more effective Hylo-forte eye drops). It needs management and kindness but is hardly an expensive condition for the NHS as so little can be done - why we need to wait at least a decade for a diagnosis to tick a box before we can access the specialists is a no-brainer. The BSSA and FB groups do provide peer support.

why do I keep suffering from Orbital Cellulitis?





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I started developing symptoms shortly after the menopause (I assume I had mild symptoms before but are now exacerbated by the menopause) I have read it takes about 6 - 8 years for complete diagnosis of Sjogren's Syndrome. I have had major dry eyes and throat for about a year now; have tried all the artificial tears, punctal plugs going but find that every night my eyes are completely dry and end up getting corneal abrasions most nights even though I plaster the eyes with lacrilube; also my throat feels like I am swallowing through a tight plastic bag which is suffocating me (that is the only way to describe it) haven't slept properly for as long as I can remember. Now got joint swelling and feels like every limb and joint is inflammed. I have been on Hydroxochoriquine for a short time but caused migraines and also for a short while Methotrexate (but am quite scared to stay on this as has awful side effects worse than the acheing joints!!) I also suffer from peripheral retinopathy including Raynard's syndrome and toe cramps but the main thing I would have back in an instant would be my eyes, just to not suffer at night time anymore so that I could sleep again; I would lose a limb if I could get that back; it is such a horrible lonely debilitating illness that no-one knows anything about and your nearest and dearest do not give any sympathy to as you look so normal on the exterior. I feel as if it will just gradually get more chronic and never get better and hope and pray for a cure....





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Hi, i have ss, and suffer with many side effects rom this horrid illness, including dry eyes mouth, dry skin, raynards bladder disorder, gusto problems, chronic nasal disorder weight lost, ear problems acid reflux and the list goes on and on. I also had copd,calapsed lung, i do find it hard to live with but five years on on, i just about manage day at a time. I also.find people just dont understand how this illness can affect day to day living, i hope you find peace and understanding, with your s.s. im still looking for mine,

I'm 15 and have a dry mouth, dry eyes and pains all over my body time to time? Is there any options?





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Hi Emma I was diagnosed with sjogrens syndrome when I was 15 I'm 19 and I currently take hydroxychloroquine every day and eye drops.

Hi Emma I was diagnosed with sjogrens syndrome when I was 15 I'm 19 and I currently take hydroxychloroquine every day and eye drops.


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Sjogren's syndrome is a condition where the body's immune system malfunctions and begins to attack healthy tissue (an autoimmune condition). Read More »

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