Sjogren’s syndrome

Welcome to the latest in our series of informational blog posts which look at different medical conditions

Today I’d like to focus on a condition called Sjogren’s syndrome.I first came across it a number of years ago when it was widely reported that Venus Williams, the Wimbledon winning tennis player, suffered from the condition.

So what actually is Sjogren’s syndrome? It is an autoimmune condition whereby the body’s immune system attacks those glands which can produce fluids. Examples of this include the saliva and tear glands.

It is worth noting that doctors see two types of Sjogren’s syndrome. Primary Sjogren’s syndrome when it is a “stand alone“ condition. And secondary Sjogren’s syndrome where it is combined with another autoimmune condition such as Lupus.

The condition is very common – with around 3% of us suffering from Sjogren’s syndrome. Interestingly 90% of people with Sjogren’s syndrome are women.

The main symptoms of Sjogren’s syndrome are:-

a) Brain fog – and general cognitive issues.

b) Sinusitis and nose bleeds.

c) Dry mouth.

d) Tooth decay.

e) Difficulty chewing and swallowing.

f) Nerve pain especially in the limbs.

g) Dry eye. Eye infections are also common.

h) Vaginal dryness in women.

i) Gastrointestinal problems.

j) Bronchitis and pneumonia.

It you are in any way concerned about these symptoms and how they apply to you, it is vital you see your Doctor as soon as possible.

We are also very interested to hear from people who have suffered from Sjogren’s syndrome. It would be great if you could use the comments box below to share a bit more about your Sjogren’s syndrome journey. It might be useful for you to consider the following questions-

1) How long ago were you diagnosed with Sjogren’s syndrome?

2) What were your original symptoms?

3) How difficult was it to get a diagnosis of Sjogren’s syndrome? What tests were used?

4) What treatments have you received for Sjogren’s syndrome? How effective were these treatments?

5) What one piece of advice would you give to somebody who has just been diagnosed with Sjogren’s syndrome?

mommyknolls	My symptoms first started off as excessive dry mouth, eyes and arthritis. My PCP did blood work which confirmed his suspicions initially of it being Sjorgren’s Syndrome.
GenevieveGaea	MelanieLongManera That is soooooo weird. I totally forgot about that but I was supposed to get contacts when I was 13 and in the 8th grade. I wore them less than a week before they turned yellow, cracked, and were useless. Eye doctor said my eyes were simply too dry to wear contacts ever but never mentioned Sjogren’s syndrome. He just said it was very odd for a 13 yo to have such incredibly dry eyes. So jeez– maybe I don’t even know when it started. Maybe it’s just how I’ve always been until it reached such a debilitating level even the doctors couldn’t deny it. How crazy is that?
MelanieLongManera	I have never been diagnosed but have all the symptoms (since I was 19 years old; I’m 50 now). I have APS (antiphospholipid antibody syndrome). I would guess my Sjogrens is secondary to that. It started out with me not being able to wear contacts due to dry eyes. I was diagnosed with APS in 1992 after 3 miscarriages. I definitely have the brain fog, the dry eyes, and dry mouth. Just wish I could wear contacts.
GenevieveGaea	In answer to your questions for people who have Sjogren’s Syndrome. 1) I was diagnosed in 2012 approximately 4 years ago. Sjogren’s syndrome is primary. 2) Fatigue, Dry eyes, Dry mouth, Brain Fog, Sinusitis & nose bleeds, All of my teeth extracted but still unable to wear dentures due to Dry mouth, trouble swallowing, chronic and frequent unexplained nerve pain, digestive troubles, skin rashes. 3) Fairly difficult. I’d been tested repeatedly since symptoms became more pronounced and extreme in 2001. It took more than a decade. And I’m quite sure I was ill for many years before that. I had many of these symptoms as early as 1990. They were milder and came and went in those days. 4) I’ve taken the recommended prescriptions but I had no luck with them. I took them in spite of the severe side effects for 3.5 years because the doctors told me it takes a very long time to see progress. Then I stopped taking them and I can say with authority that the medications did not increase my symptoms but refusing to take them did finally end the horrible side effects. Until they come up with better options, I will not be taking any more prescriptions for Sjogrens syndrome. It’s very hard coping but again I’m better off on nothing since they didn’t help. Also helps to add one med at a time and see for yourself by taking detailed notes what does what to you and if it is actually helping or not. If you begin the whole regiment all at once… you won’t even be sure what is a side effect and what is a symptom. And you should take notes because brain fog makes it really difficult to remember the details from day to day. In some people, certain medications will increase confusion. I sometimes wonder if the doctors only thought I was improving because I could not participate reasonably on some medications because I couldn’t remember how I felt from day to day. If you get so forgetful you can’t complain it doesn’t mean you have improved. It just means you’re no longer able to articulate it. 5) Be kind to yourself and be gentle with yourself. Reassess all of your priorities and lower your standards accordingly. It’s OKAY to have down days. But be sure before you trade a good day’s energy for any task that it’s YOUR CHOICE to do so. I mean seriously… do not prioritize your good day energy and use it for someone else’s standards of whatever… Figure out exactly which things YOU don’t want to compromise on for YOU. And don’t compromise if you can help it. Meanwhile, feel free to compromise on ALL THE OTHER THINGS because you are going to have lots of times you simply cannot keep up. Don’t be afraid to ask for help because people cannot see your Sjogrens. Likewise, push on the days you can so you get to hang on to your physical and mental abilities as long as you can. There will be a day when you miss them. Don’t fret about that day that is coming. It’s a waste of the good days and now. Don’t let the ignorant asshats push you around or make you feel bad about your best. And for God’s sake don’t be an ignorant asshat to yourself. You deserve better. Finally, no regrets. Regret just keeps you from using the good days well. I try to consider this journey through Sjogrens syndrome sort of a life lesson in how I changed from a type A personality into a far more flexible self-aware person with self-esteem that is not based on my usefulness but on my character. Good luck. You’re going to need that and heaps of introspection and tons of humor to get through this but the good news is… it won’t kill you. It can make you miserable for the rest of your life though if you let it. Don’t let it. A sense of humor can be the best tool in your arsenal.
KHealey	I was diagnosed Primary Sjogrens approx 23 years ago. Started off with swellings around my saliva glands. I had constant infections in my glands. After a whole load of tests and no conclusion, I was sent to a specialist hospital. Had lip biopsy, blood tests and Dry eye tests. I have since been diagnosed with Lupus, Fibromyalgia, maltomas, Rheumatoid Arthritis. Treatments…. hydroxycholoroquine sulphate, prednisolone, vit D, Rituximab, Methotrexate. Rituximab helped most but I had a severe reaction 4 treatments in so had to stop. Recently I’ve had a lot of eye issues and had silicone put in my drainage ducts. I use several prescribed gels and drops to try and replace the moisture in my eyes.
CharlieOsgood	Hi all I was diagnosed 7 years ago and I have lupus, RA, OA, DDD, cfs, iih, reynaulds, and fibro, im on hydroxychloriquinine and pain meds, I get lots of pain but don’t always know which condition is causing it, I get dry mouth & eyes and widespread pain in joints, dry sinuses too. I run a group on Facebook for uk members called Sjogrens support uk also I write a blog myimmunesystemattacksitself.blogspot.co.uk
MaryAnnLaihr	My ANA is always positive! But they say it’s because I have other autoimmune diseases, MS, liver disease, hypothyroid, roseca, etc. So the test would not even be worth it?
MaryAnnLaihr	I have Multiple Sclerosis. I have all of these symptoms but I bet if I mentioned it to one of my Dr’s, they would treat me like I was a hypochondriac? Or flat out say it’s just MS?
GlyndaRitchiePierson	I was diagnosed about 8-10 years ago. Started with my eye doctor. I have tried punctual plugs which progressed to punctual cauterization. I use Restasis for my eyes and about 2 years ago I started having trouble swallowing and was given pilocarpine. It is a daily battle that goes along with my RA
theoangel10	I was diagnosed with Fibromyalgia and Undifferentiated Connective Tissue Disorder approx. 7 years ago. My ANA test results kept coming back positive negative positive or negative positive positive but never had 3 positives so my rheumatologist at the time said she felt either Lupus or Sjogren’s was lurking in the background. I then moved and was diagnosed with Generalised Joint Hypermobility Syndrome in December 2013 as well as confirmation of the fibro by a new rheumatologist but nothing was said re the UCTD. As time has gone on my condition has deteriorated quite dramatically and I also suffer with a lot of the conditions that are seen as common with fibro and joint hypermobility such as IBS, leg/foot spasms, depression, burning sensations, migraines, extreme fatigue, severe pain, recurring bursitis/tendonitis. joint dislocation, brain fog etc plus I have osteoarthritis, recurring superficial thrombophelbitis which often causes cellulitis, degenerative disc disease, vasovagal episodes, compromised immunity, menorrhagia, high BP, panic disorder, asthma and severe anaemia. I have just recently been diagnosed with Laryngopharyngeal Reflux Disease (LPR) too ! I also get frequent bouts of bronchitis, have had pleurisy but no pneumonia, dry mouth often with soreness/ulcers, dry eyes with fairly frequent bouts of conjunctivitis/blephritis, nose bleeds every two/three months, swollen painful glands, have issues with my teeth breaking/chipping/pitting & discolouration to them and problems with my jaw (TMJ) and also issues with swallowing at times … I have told my GP that I am supposed to have ANA, CPR, ESR etc bloods taken every six months to check the levels etc but to no avail until last week when I saw a different GP so I am now waiting for an appointment to have yet more bloods done. I also see various consultants … gynae, haematology, pain clinic and ortho but don’t see a rheumatologist at the mo ! Would like to ask others opinions … Is this just my fibro/joint hypermobility plus other conditions mentioned or do you think as my original rheumatologist something autoimmune is lurking ??? Also I think with just the conditions I have I should have regular rheumatology appointments … what do others think ??? Many thanks x
topekachristal	I think I may have Sjogren’s. I’m meeting with the rheumatologist next week after being referred from the allergist. I’m only 24 but in the last four years I’ve been diagnosed with IBS, Narcolepsy, Chronic Sinusitis and Recurrent Bronchitis. Since I was a child I’ve had extremely dry skin, ADHD and every once in a while my limbs would turn purple and become cold. I’ve had to get plugs in my eyes because of dryness and no amount of lotion seems to help my skin. Ive also had migranes for about 1 year. About 8 months ago my back started to fall asleep and now it goes numb several times a day. I’m not sure if it’s related but it’s terrifying. The most recent and most upsetting development is my lips. One day I woke up and they were bright red and swollen. By lunch they were beyond chapped and by night the skin had cracked open and was falling off in chunks. It is very painful and extremely embarrassing. I feel that it’s worth mentioning that my mother has Ulcerative Colitis and my grandmother had Fibromyalgia. Does this sound like Sjogren’s to anyone else?
KatrinaRose	I was dianoised 5 years ago. I first went for hair falling out, no energy constant pain weekly migraines, and no weight loss after having a baby. Got diagnosed with hypothyroidism, but still had a lot of symptoms. It took three years to get diagnosed. I was diagnosed with fibryomaylgia 3 years ago. have been on plaquilnil, prednisone, lyirca, meloxicam, tramadol, cycbenzenprine, anti depressiants, and synthroid. My symtoms are brain fog, joint and nerve pain, bad teeth, dry everything, butterfly mark, bowel issues, migraines, low energy. I have symptoms of lupus but I dont have the markers for it. My best advice is listen to your body. Stop when you have to even if you feel guilty. Eat as healthy as you can, and tell people. Explain to your family and friends until they understand that you have to limit yourself. I sent the spoon theory to everyone and told others to get them to understand. There are no awards for taking on more than you can.
KarlWolfe	Please get tested for any type of fungal infection. The symptoms overlap when the condition exists in the chronic stage…can be overlooked as a cause of CNS issues. Any type of fungal or mold infection can be similar to other illnesses but is not often looked for.
TallBird	After a three year and a half year journey with a myriad of symptoms I was eventually diagnosed with Sjogrens Syndrome last week via a salivary gland biopsy. When I first became unwell I was experiencing gritty, puffy eyes, constant dry mouth, terrible joint pain in my knees and fingers, muscle aches and fatigue/weakness, skin rashes, one sided headaches, tingling in feet in particular and hands, flu like feeling, chest pain and shortness of breath, frequent urination (approx.20-30 visits to the loo every day), tinnitus, nausea and inflamed throat. I still have these same symptoms three years on but in differiing levels of severity. One of the most bizarre symptoms I had at the beginning but thankfully has gone was a feeling of being constantly ‘spaced out’ and not with it mentally. Going outside was a scary experience especially when trying to cross roads and judge kerb heights. It was as if my head was full of cotton wool. The ‘spaced out’ feeling started after a couple of weeks of continuous extreme headache and head pressure where it felt as if my head was going to explode. I only experience mild problems with processing information now thankfully. I have been prescribed Hydroxychloroquine and eye drops. I take my hat off in admiration to anyone who endures this condition – the medical literature in many cases seems to minimise the severity of the symptoms and the effects on the quality of life of those living through this.
crybabycry	I was diagnosed with Sjogren’s 2 years ago after I was just diagnosed with MS. However it may have been present earlier. I’m 40 and at 19 I was diagnosed with rheumatoid arthritis but after the initial episodes it seemed to have gone in remission. Years later my RA doc said no you do not have this but you have the trait. Don’t get tested any more for it as it will always be positive. So confused I went away thinking what was it all those years ago. Fast forward a year later I have my first bout of numbness, doc said oh probably carpal tunnel. I also had vertigo really badly. 3 months later it was gone. Another year passed and the numbness returned in my legs this time. It kept getting worse. I had dry mouth I had been complaining about for a year. Finally I get an MRI and the test suggest MS. LP confirmed it. But my nuero here’s the dry mouth stuff and the RA and he has me get a lip biopsy. This is how we found I also has SS. But it is secondary to the MS. I also realized it had been years since I’ve been able to cry with actual tears falling. My eyes burn but no tears fall. Hindsight this was also a sign. You never know…
rebeccavaughan	If you are immune compromised, then it is imperitive that you get the flu shot. It is not a live vaccine and can save your life . Do NOT however get the nasal one because it is a live vaccine , also you should not be around someone for a week after they have received this kind.
southbendlindah	BarbaraGraziano southbendlindah Barbara, I was also told that I shouldn’t get the flu vaccine. My family is encouraged to get vaccinated, and my husband gets his every year. Last year, I contracted a strain of the flu that wasn’t A or B, and it landed me in ICU for five days… 🙁
BarbaraGraziano	southbendlindah do you do a flu shot every year? I was told to avoid vaccinations. What is your experience with vaccinations?
southbendlindah	I was diagnosed with sjogren’s/sicca syndrome about 6 years ago, at 50. I have many sjogren’s symptoms, except I do NOT have the the dry eyes/mouth. Because I had a positive ANA antibody blood test on more than one occasion, Lupus is also suspected. I have a very weak immune system, and have since birth. I was tested for MS, Epstein Barre and several neurological illnesses in my 30s and 40s. I’m susceptible to Meniere’s disease-like symptoms, which causes a complete loss of balance and comes on suddenly, usually at night. I’m also susceptible to UTIs, especially when fighting a virus. I have intermittent neuropathy in my feet and lower legs which causes bee sting-like sensations, and have had Bell’s Palsy and am prone to C-Diff. I take care to eat properly, rest ALOT, take vitamins and try to reduce stress in my life, as a simple virus can land me in the hospital. I was on plaquenil for a couple of years, but a rheumatic specialist at Cleveland Clinic decided that the risks did not outweigh the benefits. I also have many of the symptoms of fibromyalgia/lupus. It’s been very difficult to pinpoint the exact illness I suffer from, and after many years, I have decided not to seek a specific diagnosis, and have learned to simply manage the symptoms. I am blessed to have a wonderful primary care doctor, whom I trust. I have an open order for blood work, which I can have done if I’ve been extremely fatigued for a long period of time with no known cause, as one of my fears is that I’ll ignore a potentially treatable problem. I also have Tamiflu, which I can use in the event I’m exposed to influenza. The only prescribed medication I take is Ziac, to control HBP, and Cymbalta, which is to control the pain in my extremities. I eat healthy, and take a good multivitamin daily, as well as Vitamins C and D3. When I’m feeling a virus coming, I double up on the C and D, and take care to rest whenever I feel the need. Stretching helps when my arm and leg muscles feel tight. Aside from the acute illnesses, the most frustrating part of my illness is the ‘brain fog’/memory loss and the constant fatigue. My advice for a recently diagnosed patient would be to 1) find a doctor that you trust; 2) ask questions, and make sure you understand the answers completely; 3) eat for good health, take approved vitamin supplements; 4) reduce your stress levels; and 5) get lots of rest.
BarbaraGraziano	Jenna66 Hi Jenna: if you haven’t already, have your dr refer you to a urologist for interstitial cystitis, another autoimmune disorder of the bladder.

Obviously we are interested in anything you have to say so these questions are really only a guide. Feel free to add any links you think will be of interest as well.

Many thanks in advance.

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