What is Sjogren’s Syndrome?
What does Rheumatoid Arthritis have to do with Sjogren’s Syndrome?
Often we hear of the “characteristic dry eyes of RA.” However, we have more urgent concerns of our Rheumatoid Arthritis. This may be one reason that we don’t know much more about Sjogren’s syndrome. We have often accepted dry eyes as just one more RA symptom without exploring further.
What is Sjogren’s syndrome?
Sjogren’s syndrome is an autoimmune disorder in which the lymph (immune) system attacks the exocrine (excreting) glands. It is characterized primarily by dry eyes and dry mouth. About half of the time, Sjogren’s occurs with Rheumatoid Arthritis or other rheumatoid diseases; this is Secondary Sjogren’s. However, Sjogren’s can appear alone; then it is Primary Sjogren’s. Sjogren’s incidence is about 90% female.
What will I notice with Sjogren’s syndrome?
Patients may not be aware that their tear ducts are less operational until they experience itching, burning, redness, or sensitivity to light. By then, Sjogren’s has attacked the tear glands and begun to damage the cornea. With regard to the mouth, patients might first notice lip dryness or difficulty swallowing dry foods like bread. Often, there is a constant urge to drink something or put something like a mint into the mouth.
Why should I care if I have Sjogren’s syndrome?
Rheumatoid Arthritis has most of us pretty well trained to never complain. We don’t want one more roll of the eyes. And we don’t need one more doctor’s appointment on our calendar. To us, having dry eyes is a less significant problem than others we routinely face. For these reasons, we may not get treated for a problem which may be readily treatable. It is also important that we know a bit about Sjogren’s because we should be monitored carefully for the more perilous symptoms. The rarer symptoms are serious, but usually treatable.
What are the symptoms of Sjogren’s?
Common symptoms of Sjogren’s include eye dryness leading to eye infections and erosions of the cornea which may be experienced as a “glare” sensation; mouth dryness may lead to cavities since antibacterial saliva is reduced; gastric hyperacidity because the body also uses saliva to neutralize stomach acid; depression; sleep disruptions; severe fatigue; arthritis and arthralgia symptoms (muscle and joint pain and weakness); nasal and upper respiratory dryness.
Less common symptoms include involvement of skin (rashes), lungs, heart, pancreas, kidneys, liver, spleen, and lymph nodes. Joints, nerves, or muscles can become inflamed. There is also damage which can occur wherever mucous has been reduced by affected glands. For example, nasal dryness may cause nosebleeds and trachea damage can lead to respiratory infections. Damage to lung tissues can lead to pneumonia.
How is Sjogren’s syndrome diagnosed?
Sometimes the same blood tests which indicate other auto-immune diseases are used to indicate Sjogren’s, such as ANA, ESR, or Rf. However, some simple office tests can be used to get a more specific indication. There is a crude filter paper test in which a doctor uses paper to measure the moisture on the surface of the eye. A slit lamp exam provides a magnified 3-d scan of the eye, revealing damage caused by dryness. The Rose Bengal test makes dry spots and mucous abnormalities visible by applying a food dye to the eye. If necessary, more elaborate tests such as biopsies or x-rays can be done.
How is Sjogren’s syndrome treated?
There is no cure. Heard that one before, haven’t you? Often, the same DMARDs and Biologics used to treat Rheumatoid Arthritis are used to slow disease progression and to control inflammation in Sjogren’s syndrome. Additionally, there are self-care options to deal with the “leftovers.” Symptoms of Sjogren’s can be helped by treatments including prescription eye drops.
Listen to a doctor’s advice:
“Although it sounds rather frightening that Sjogren’s can affect other parts of the body, it is important to recognize that each of these problems is responsive to therapy if detected early and treated adequately. It is equally important to recognize that SS patients are not exempt from other common problems that may occur in these age groups. Thus, it is unfortunately too common that a treatable problem was delayed in diagnosis since the symptom was incorrectly attributed to SS. For example, the same symptoms in any other patient might have been readily diagnosed as a routine pneumonia, gall bladder stone, kidney stone or ectopic pregnancy,” ( from dry.org, Drs. Fox and Michelson).
In case you were wondering, Sjogren’s is pronounced “show grins.” I always said RA’ers were good-natured folk. 😀
Detailed overview of Sjogren’s syndrom at emedicine.
Recommended reading:
- My Quest for Answers to Questions About Rheumatoid Arthritis
- Some Answers for Rheumatoid Arthritis Just Bring More Questions
- Ankylosing Spondylitis and Rheumatoid Arthritis
I would love it if you would write about Ankylosing Spondylitis like you did for SS. It is so very similar to RA and it is a form of RA. I follow your RA blog even though I have AS because there are not AS blogs out there and fellow RAer are the only ones who can truly understand my pain. But I would love if RAer had some knowledge of AS as well.
As always, thank you so much for keeping us all up to date on all of the research and happenings of the arthritis world and helping gain awareness for RA! We have all come together to support each other because of you and feel so much less alone.
I have been working on Ankylosing Spondylitis research this weekend!! So, soon…
Thanks for the encouraging words. You are a so kind. 😀
Pingback: Latest tests for sjogrens syndrome news – Diagnostic Tests for Sjogren’s Syndrome – OrganizedWisdom Health | SJOGRENSSYMPTOMS.COM
Thanks for this Kelly –
As always you seem to know what I am going through at any given moment.
This has been one of the worst weeks I have had since my onset. I have missed almost a week of work (so far the FMLA is holding up for me – please keep your fingers crossed – mine already are crossed from the RA so hey may as well get good use from it, right!)
In the last couple of days my nose and eyes have been dry and itchy and I thought it was from the windy conditions going on in AZ but they are still dry and itchy and the wind has stopped. My nose was so red and sore that it brought tears to my eyes trying to scratch (at least the moister helped my eyes!)
I see my PC this morning for a note for work – wondering what your views are on B12 shots?
Sorry my post is a bit disjointed but then again so am I.
Have a terrific weekend and thanks as always for all that you do for us.
My doc did a saliva test where thy take a piece of you tounge and send it off to test it.. Insurance throw a fit because it was considered oral surgery, something they did not cover. DOc had to write them 6 letters to tell them I had RA, Lupus, Fybro and now Sjorgrens, it was not Oral surgery to make my teeth pretty was to help Dx my problems.. Make sure your doc tells your insurance before any major tests.. Good luck to all of you, bless your hearts if you have it.
Anita, thanks for the interesting story. One of many reasons we need greater awareness. Should be listed as a “normal” thing to test if one has rheumatoid, right? Should go with the dx of RA like you said.
Kelly, I didnt realize that there were secondary diseases to RA. Im like wow when I read this articl because it described everything im going through that I thought were side effects due to the meds. Cotton mouth, vision changes, itchy eyes. I wear sun glasses all the time. Even when its not sunny because it eases the blurryness. Thank you so much! I will now look into the other secondary problems and see if these are the reasons for my other symptoms. Question..Why bother paying all the money for the eye tests if there is no cure and if im already on alot of DMARDS?
Waynette, there are many secondary diseases to RA. I hope your aggressive treatment helps you from getting them!
I hear you! Sometimes, a rheum doc will diagnose the Sjogren’s but I had to go to an eye doc to get my diagnosis & treatment (even though it’s a rheum disease). We tend to have so many symptoms going on w/ RA that the RA docs are overwhelmed & we need other specialists for secondary conditions to be treated. Probably better treated by specialists anyway.
Ok, Today my Rheumatologist told me I was as close to remission as he had seen for a while. I have been pretty much sympton free for about 6 months.
I am taking Simponi once a month
.6mg injectable mtx once a week
2000mg of fish oil
and a few other supplements
So why Ray are you posting in this part of the blog… ?
Good question, I am glad you asked 🙂
My doctor also told me he was testing for secondary Sjogrens Syndrome. I have been having incredibly dry eyes and mouth for several weeks. I chalked it up to RA and only mentioned it to the Dr in passing as I was leaving. Nope, straight to the lab for more blood work. I guess I will know a bit more in a few days. For now “Refresh” Eyedrops and Biotene spray and gum. So pretty simple treatment all things considered.
So remission with new symptoms 🙂
The good news is I am as pain free as I have ever been since my RA diagnosis. So no real complaints, only changes.
My best to all of you.
Ray
I had been diagnosed 6 months before seeing a rheumatologist. He ordered so many labs that the specimens filled 17 multicolored vacutainers. When I received the results, the rheumatologist had the saddest look on his face; confirmed the RA with elevated titers, sed rate, anti CPP, and then he mentioned complement testing. I was already overwhelmed, though partially relieved, and now a bit optimistic, because this guy knew his stuff. He told me that I had an aggressive form of RA and indications that it will progress, and that I also had Sjogren’s syndrome. I didn’t pay much attention to that diagnosis. I had no problem crying a pool of tears, so the Sjogren’s must be so mild… About 3 years after diagnosis, I experienced vasculitis in my leg. It was incredibly painful, with the entire leg swollen to 3 x the norm, and loss of the distal pulses. The pain I could only describe as “acid in my veins”. My daughter was getting married in 2 weeks. This could not happen! I made it to the wedding, thankfully. It was thought that the Sjogren’s was responsible for that. Still able to cry a puddle. A few months ago, I was trying to work on my vacant house to prepare for sale. When I went to bed, I had the most incredible pain that shot through my lip, cheek, and into the floor of my eye. I immediately thought it must be a bad tooth, but I have never experienced a toothache in my life, I just assumed, and sped off into the night in search of a 24 hour store to buy every preparation I could for toothache. Immediately squirted the oragel all over the teeth on that side of my mouth, and got minimal relief. Took some analgesic that I had squirelled away from the vasculitis and went to bed. It’s not a bad tooth. The pain is in my cheeks (deep ache) sometimes causing a pretty bad headache. My mouth looks like a leper, with bare and sore areas that extend to the base of my tongue making it difficult to eat. I usually immediately brush my teeth and sometimes get almost immediate 75% reduction in pain. I’ve noticed that I’ve always been pretty conscious of my salivary glands, even as a kid, this was seeming more familiar, but it’s just such a weird thing, that I never thought it meant anything. I’ve also had episodes where my blood pressure was extremely high, the blood vessels dilated on just one side of my body, the familiar “acid burn” in my veins, feeling of heat and then some loss of peripheral vision that never came back after that. In general, my eyesight is probably about 25% worse over the past year. The thing that puzzles me, and I’m not being poetic here. I seriously have no problem crying and when I cry, the tears are just massive. I now have to sleep with a piece of gum in my mouth, because otherwise, I am awakened with intense facial nerve pain. I have always been a kind of “dry” person. My skin has always been “supple”, but my eyes have always burned, I have never had sweat run off my body and have always led an active, outdoorsy life. To this point, the Sjogren’s has been manageable, and by paying attention to the symptoms, I am waiting for my next appointment, to discuss this further.
I have RA and secondary Sjogrens. In addition to all of the RA meds, I use Restatis for the eye dryness, which works to a point but not when my allergies are bad. There’s really nothing for the dry sinuses but I use a steroid spray for my allergies. My real problem is my mouth. It is so dry that every tooth has decayed and is either filled or crowned. Now, the teeth that are not crowned (in the front) have had the enamel wear away. My dentist has tried coating the teeth but I now have two-toned teeth and have stopped smiling. If anyone has had this and/or has any ideas for me, I would appreciate hearing from you. Thanks.
I was given a drug called Pilocarpine hcl 5mg by my RD for my horrible dry mouth. I take one in morning and one in the evening but can take up to 4 per day. It has done wonders, my wife will actual come near me again because my breathe isn’t down right horrendous all the time. My eyes are always red and a little dry, way to dry for contacts so I now wear my glasses all the time (I hate wearing my glasses but can’t see much of anything otherwise)
In my house Sjogren’s Syndrome equals 4 bags a week of cinnamon discs. I have one sitting in my mouth day and night. I’ve mastered the art of sticking it between my cheek and teeth if I have to talk. LOL Warning: try not to fall asleep with one in your mouth because you might accidentally swallow it, which is pretty impossible to do, so you wake up coughing and gagging until you can bring it back up. Not fun. But the good news is, I don’t have cotton mouth and my breath is always cinnaminty fresh!
I am seeing Sjogren’s symptoms regularly now. Sjogren’s was diagnosed by bloodwork when I was diagnosed with RA, but I never had any symptoms that I was aware of (with the exception of vasculitis). For the past several months I have been have symptoms as described in my previous post. TODAY I was able to link all of the symptoms; head fullness, facial pain, decreased hearing to the Sjogren’s. My gums, the inside of my lips have been burning, severe jaw pain, with unexplained cause after dental exams. Still pending results of CT scans, MRIs of brain. Recently visual problems and vertigo. I NEVER gave Sjogren’s a second thought. It was like a side salad to the RA. It has taken several months of continuous symptoms to be able to pinpoint it. Today, my gums and mouth burning was intense and accompanied by the deep ache in my face like I had put 10 warhead candies in my mouth. I can relieve it momentarily by brushing my teeth (no enamel left), drinking fluids. As long as there is continuous contact with something in my mouth, my pain will go from “7” to “1”. Quite dramatic. I would never describe this as “dry mouth”. My mouth feels moist, looks moist, etc. I have saliva in my mouth. After seeing the location of the salivary glands, I have no doubt that this is what I am dealing with. My eyes, do not feel dry or gritty, I produce tears (believe me) but I am wondering if it causes a redistribution of fluids between chambers of the eyes that cause visual distortions and pain. I think it’s kind of weird when you ask what is RA and what is Sjogren’s (or probably any disease for that matter) the description of the diseases really downplay the symptoms. The descriptions of these diseases really should come from patients for accuracy. Additionally, Ive known that I have had the Sjogren’s for years (since my dx at least). The symptoms I report correlate with what occurs in Sjogren’s. Over the past 3 months, I have seen 5 physicians and no one has suggested the Sjogren’s at all. Over ten thousand dollars in medical bills in the past 3 months for additional diagnostic testing, and a disease that I have been known to have has never been identified as the cause of these symptoms, until the intense burning relieved by placing something in the mouth (which feels like it causes the salivary glands to “release” is the only way I can describe it). It seems everyone is trying to reinvent the wheel. 17 years ago, my first sign was Cotton Wool Spots on the retina and the doctor went off on a crazy tangent that I had HIV, instead of investigating other autoimmune diseases. (All HIV testing has been negative every year for the past 17 years) When I developed the first dramatic symptoms that lead to diagnosis with the RA, the doctor was blaming it on everything else, like getting old at age 40. They can’t see the forest for the trees.
Please forgive my rambling. I am just so frustrated. I go to the doctor for acute symptoms, and testing takes time. While I understand that it takes time for testing and making appointments, the doctors forget that while a few months is a relatively short period of time; to have symptoms for 3 months becomes intolerable.
It’s ok – it’s useful rambling, Belinda. So many of us going through the same processes. 🙂
@Belinda While reading your post this morning, I found myself asking “where in the world does this girl live?” The way the doctors have treated you, I would almost suspect some 3rd world country. My heart goes out to you. I also have Sjogrens. We have a lot of symptoms in common and I have the ones you don’t have. But you have the symptoms I don’t. I chuckled at your comment regarding keeping something in your mouth at all times to relieve many of your face symptoms. I don’t have the face symptoms but I do have uncommonly dry mouth. It is so bad at times that I literally cannot swallow. I mentioned this in my last post….keeping a bag of small hard candy with me at all times is the only way I’ve found to get around the symptom. I too have the jaw pain and mouth sores, plus flaming gums. Since being diagnosed with RA so late in the disease (very advanced and aggressive), I literally lost all my teeth. I’m not sure which disease caused my teeth to start just falling out, but it really doesn’t matter does it? I asked my first Rheumatologist if I might have Sjogrens and he said, “probably”. That was the end of the discussion. After going through 5 doctors, I found one that addressed my concerns and really listens to my symptoms. However, he explained to me that the drugs I take for my RA are exactly the same as for Sjogrens. So, I continue my hope that science will come up with a cure for all of our autoimmune diseases. Meamwhile, I put drops in my eyes 4 times a day, keep candy in my mouth at all times, and use moisturizers and ointments for just about everything else. Of course, the constant dose of pain meds makes my daily life tolerable at times…..but there are days when nothing helps. An amusing sidenote: I recently came down with Bells Palsy which caused my face to melt downhill on one side like a cartoon character. The doctors’ best advice to me…….try to eliminate the stress in my life! ROFLMAO! Yea right. Good luck to us all, and thank God for Kelly Young!
Hi Kelly.
I love your website. I first sought help from my internist In July 2012 for extreme fatigue, morning stiffness and joint pain in my hands, feet and knees. Lab tests showed a positive RA titer (57) and positive ANA. The Rheumatologist ordered more labs and because of a positive SSA/Ro diagnosed Sjogrens Syndrome. However, I dont have dry eyes or dry mouth. Have an opthamology appt. in 2 weeks. Just started Plaquenil 200mgm twice daily. Have you heard of SS without the “dryness?” Do I need a second opinion? Should I just wait to see how the Plaquenil does? Thanks
This is a very interesting read….I have just been diagnosed with gallstones…I spent a lot of time sucking mints to kerb my dry mouth that was probably attributed by “SHOW GRINS!”(luv the name!)…..
Oh Kelly this site has info on every aspect of RA and more!
Well done!
Thank You Thank You Thank You
hi, ive had ra for at least 5 or more yrs. I have a rash covering my whole face along with dry eyes and cotton mouth. I am wondering if anyone else with sjoren syndrome has this type of rash on there face as well? bev
I have had the strangest year. I turned 25 in October and have been telling peoole I feel 125!! Earlier this year I would feel so feverish and chilled but never had an oral temperature above 99.2. Then in February I had a swollen, tender gland in front of my right year. By the time I was able to get into the doctor she couldn’t feel anytging. Then one week in July I woke up with a stiff, VERY painful shoulder that lasted about 4 days and went away. Then 2 weeks later I woke up with both shoulders stiff and painful. It lasted about 4 days. Stubborn, I still didn’t go to the doctor. In September my jaw was so stiff I could barely open it and it was extremely painful. I also had brain fog going on and numbness and tingling from my elbows down the lateral side of my arm into my hand. Then in October both knees, hips, shoulders and elbows and jaw were so stiff and painful I could barely move. I was so tired, it didnt matter how much sleep I got. I finally went to the doctor. She did labs and my cbc,CCP, ANA and sed rate were all normal. My R.A. factor was slightly elevated, 26 but she said she wasn’t concerned about it. I went to a wonderful rheumatologist who was very thorough and said ahe couldn’t diagnose me with anything but that she was going to monitor me closely because something sounds like it could be brewing. Leaving her office I realized I has the worse cotton mouth ever. Water was not helping! Then the left side of my face became painful and slightly swollen. I started to cry…but had no tears. I suffered through this last weekend. Went to the eye doctor Monday who confirmed that I have hardly any tears and dry eyes. Went to my family doc last night and she is re running the ANA, R.A. factor, the sjogren labs and CCP. I know something is wrong. But no doctor can pin point what it is yet due to labs and xrays being normal. I would just like my pain to be less than what it is. I am wondering if R.A is associated with neuropathy? I have the worst pins and needle and burning pains in my feet and hands. Also, if sjogrens causes joint inflammation…how do they differentiate it from R.A. inflammation of the joints? All my joints crack so much now since the episode in October 🙁 Thanks for listening to my story.
In response to article about sjogrens & what it lead onto.. What has happened to me is that over time, I have had my mouth filled with blisters, ulcers, abrasions, splitting in part of my tongue so as to appear raw flesh wounds. Then one night my parathyroid glands suddenly popped and swelled immediately. That was when I was diagnosed as having a secondary condition to sjogrens.
The elevated risk is for lymphoma or possible removal of my parathyroid glands.
My paratoid glands now itch & swell, the maxilla consultant explained that when there is no saliva coming down through the main, I think it’s the sub mandler gland then there is a retrospective effect wherein food is drawn up into the parathyroid gland & main saliva glands of food & this causes pretty much constant infections in the glands! Nice!
So depressing, that a secondary condition has potentially more sinister or maybe equally sinister possible outcomes. The thought of having to fight lymphoma whist not managing the impact RA in my life has led to an emotional bottoming out. I think or maybe that is hope?!!
RA/RD warrior from uk. Tess
I have Sjogrens’ s n RA. Now I am experiencing shortness of breath, trouble walking ( due to 2 New knee replacements) due to
RA. How many more problems AM I going to encounter? It seems endless!!
Hi everyone. Reading this post makes me wonder if I too may have “Show grins”. 🙂
Many years ago i was told i had possible RA as blood tests showed a slight elevation. Since then no possitive results in blood..xrays or scans of any sort. Yet my bodily issues and pains persist. I was diagnosed with foot bunions..and other foot problems..cant recall their names. Sorry. Anyways podiatrist says it could be Osteo or RA. Xrays confirmed there is no bone spurs for it to be Osteo. Yet my bones in my feet are spreading apart. My fingers are twisting…my eyes are so dry that i need constant eye drops for lubricating and yes my mouth has saliva but does feel constantly dry and water does not help. I also read here having trouble swollowing food because of dryness could also be SS. I do have this issue. Pills or vitamins are hard to swollow. Im sure this is why i could with lots of saucy recipes. Im 35 years old and also am experiencing vaginal dryness and pain. I read this could also be a sign Sjogrens sydrome. Is this correct? Im so tired of having one diagnosis after another. Should i also be asking an RA Doc about theee issues, which i didnt realize could be SS?
You may need a rheum dr but you many have to also see an eye doctor and an ent for the throat issues you describe – I’ve not met a rheumatologist who deals with SS in RD except to note it in the chart that it was diagnosed by your other doctors. You need to find where you can get treated – sometimes by a combination of docs. The feet are a good example. My podiatrist has givne them MANY shots & pain cream etc. but the rheum never looked at my feet.
This might help too https://www.rawarrior.com/secondary-sjogrens-syndrome-and-rheumatoid-arthritis-a-primary-problem/
Hello,
I have sjogrens diagnosed fairly soon after sudden RA onset. It has been extreme at times, and for years at a time. Tongue spilta open, teeth started rattling and filling fall out with alarming frequency. I have a brilliant dentist, he understood when it was so painful I didn’t brush my teeth for about a year. I often can only eat alkaline food, and even those can be limited. Putting the wrong food, being tempted and giving into that temptation can bring an agonising impact and break out in my mouth. Eating crisps is like eating glass and curries are absolutely off the menu as are other strong tasting food. It seems to me it’s a little like RA in that some people have a little arthritis and can do a 4 mile hike and some people have sjoggrens and get a dry mouth. I also get tissue pain, great on top of joint pain! It’s throughly lowering. This has led to scelorsis of the paratoid which I’m under oral care for as it can turn sinister. Occasionally, there is a pop on my head and they blow up, I have been told this is due to the dryness in the saliva glands and they are fed via the paratoid gland. Also leaves me looking like a chipmunk! Another mirror sign, the loss of looking in the mirror and seeing my face as it used to be has meant I’ve had a lot of extra grieving. You Kelly seem to look so beautiful still, i feel its one indignanty after another, ten years in and counting. Looking at spine instability now, anyway that’s for elsewhere just thought I would add a little about the possible severity of a ‘secondary’ condition which is quite severe and constantly painful itself. i would recommend BioTene mouth gel to anyone with sjogrens. It calms the mouth and helps with oral homeostatsis, which in turn helps reduce tooth and gum damage.
You do a marvellous thing here Kelly.
Tess
Thank you Tess, that is so sweet. It helps to hear that.