I've got Sjorgrens. When I first read about it a couple years ago it totally made since. My eyes have been dry since I came down with RA, but I had been blaming it on getting older (mid-thirties, but undiagnosed RA made me feel about 102.) I haven't had major problems. I just don't even consider wearing contacts any more and I use artificial tears when it gets very annoying--or when my students at school fear I may have pink eye.
Debra,
Researching for this post made complete sense to me also. I had wondered why my rheumatologist always asks about dry eyes, dry mouth, or dry any other place with mucous membranes. Now I understand, she is always on the look out for secondary Sjogren's in her patients.
I hope that you continue to not experience any great problems with the Sjogren's. But to give up contacts would not make me particularly happy.....my glasses are too heavy. 
I am wondering if I have this. I have alot of symptoms of RA and Lupis but none of the blood work. I do have dry eye that i have to use the tears for. I also have psorsis and early onset OA I get so confused because for years they say I have one thing but then they rule it out by blood tests or what ever test they do. Does Sjogrens have blood work that they can give?
I was diagnosed with this about a year ago, 2 years after being diagnoes with RA. I have had some problems with the constant bronchitis and inflamation in my glands which leads to infections. I have some ulcers in my mouth from the dryness and I am getting eye exams often due to scarring. My vision has changed alot since my diagnosis so I 'm wondering if this could be part of this Syndrome? I try and read up as much as possible because even my doctors seem a little baffled by all of this.
I use an oral analgesic but they are usually not worth the money. Alot of salt water rinses and non acid foods like tomato sauce certain juices etc. Nothing seems to work and I'm not on any meds for the RA since last Jan 09. The bronchitis was z-pac for 5 days and another just in case and perscription cough syrup. Alot of steam pots on the stove to stop the nose bleeds and saline mist and herbal cough drops. My chest muscles are sore but hopefully it will get better with rest. ugh..I'm just tired of being sick and tired.
Hi Lisa,
I have not been diagnosed with Sjogrens Syndrome yet but I have been having a lot of these symptoms over the past 12 or so. I have gone to many doctors and it seems that the only thing that helps is Retnin A applied directed to the ulcers and mouth sores. It was recommend by my dermatologist but he did stress to me that it is not used internally but it really does decreased the severity of the sores.
Also, I just got the spray made by Biotene for mouth dryness and it is a great product. Ask for it at the pharmacy.
Hope this helps!
Linda
Hi Lisa,
I have not been diagnosed with Sjogrens Syndrome yet but I have been having a lot of these symptoms over the past 12 or so. I have gone to many doctors and it seems that the only thing that helps is Retnin A applied directed to the ulcers and mouth sores. It was recommend by my dermatologist but he did stress to me that it is not used internally but it really does decreased the severity of the sores.
Also, I just got the spray made by Biotene for mouth dryness and it is a great product. Ask for it at the pharmacy.
Hope this helps!
Linda
Thanks for the suggestion, Linda. I've also heard of people using L-Lysine orally and directly on the mouth sores. This is the first I've heard of Retin-A being used. Glad to hear that it works for you. Also from what I've heard, Biotene is a good product.
Thanks for contributing to the conversation.
Lisa
Thank-you for the post! Dry eyes and mouth were my first symtoms. I was diagnosed with SS (June 2006) and then RA about 15 months later. My eyes were so dry some days I could barely stand to open them. In Jan of 07 my opthamologist prescribed Restasis and it has worked wonders, most days I have no trouble with dry eyes and it has so far prevented further damage to the eye surface.
Hi Suz,
Very interesting that you were actually diagnosed with SS first, then RA. Reading about the different things which have helped individuals in dealing with the symptoms has been encouraging. This let's folks know that there are ways to tackle the effects of this disease. I'm glad that Restatis is working for you!
Thanks for posting this article. Sjogren's is often overlooked, and much more general knowledge is needed. I was diagnosed with it a year ago and what a year it's been.
In my research, I've found that doctors who specialize in Sjogren's find that a third of all patients have systemic complications. They're not nearly as rare as you might think. Also, Fatigue is a major symptom of the condition which you missed.
Sjogren's is many times more serious than most people think when they first read about it. The body's immune system will attack ANY cells that secrete moisture, so conquently our CNS, lungs, stomach, liver and kidneys can all be in danger. I've found at least to Sjogren's patents who's required Kidney transplants.
For me, Sjogren's has been an experence of almost constant pain, which is very common. I have RA like joint pain, as well as nerve pain and numbness.
Luckily, many of the drugs that hel RA patients also help those with Sjogren's. I take Plaquenil, Prednisone, Sulfasalazine, Celebrex and recieve Rituxan treatments twice a year. Like folks with RA, I also have 'Flares' when my symptoms increase, which are treated with more Prednisone.
I'm hoping that Sjogren's will be come better understood, and with that understanding more and better treatments will be available.
Thanks again for sharing the word about Sjogren's.
Hi HLinNY,
Now I have to go back and make sure that I add fatigue to the list. Not sure how I missed it, unless I overlooked it because fatigue (crazy insidious fatigue) is such a common symptom for many of our autoimmune diseases.
Before researching information for this post, I did not know that Sjogren's could attack so many organs and body functions. I knew about the possible CNS involvement because a friend of mine was misdiagnosed with multiple sclerosis for years before finally getting an accurate Sjogren's diagnosis last spring. I think it was a speckled ANA test which sent the doctors this direction....that and typical MS treatments were doing NOTHING for her. She was almost diagnosed with a MS/RA combination like I have.
This post just really scratched the surface regarding Sjogren's. It's obvious now that much more information needs to be shared and discussed here based upon the comments. Thank YOU very much for your comment and addition to the discussion.
I have RA although have not yet? developed SS. I am a Dental Hygienist and have many Sjogren Syndrome patients and I like to add the use of daily fluroide rinses and explain the need for Excellent Oral Hygiene to prevent dry mouth caries.
Of course the artificial saliva's can be used as well as keeping water by your side. But since the tooth structure has no "neutralization mechanism" from saliva it needs water to dilute the acid formed from the breakdown of our food. Theere are OTC forms of fluoride, ACT as wel as the store brand or if you are experiancing extreme oral changes ask your RDH for stronger flouride gels.
Excellent points on oral hygiene! It's good to have an explanation of WHY extra water and fluoride gels are necessary to protect the teeth and mouth. When we have normally functioning saliva glands, it's very easy to take them for granted and forget the many jobs which something as simple as saliva has.
I hope that you do not develop SS, but at least you know how to take care of your oral health in the event you do someday. Thanks for the reminders.
I think that I may have this. I was diagnosed with RA about 3 years ago, but have had the symtoms of SS for years! I now have to use eye drops daily, have nose bleeding constantly, sinus ulcers that won't heal up (have had them for over a year now), upset stomach frequently, constant fatigue (seems that the Methotrexate is not helping at all), dry mouth (drink water constantly), mouth sores all the time (thought it was the Methotrexate-Rheumy said take more folic acid-I take 2mg per day at least) and etc.
Do you think that I have SS? Will my Rheumy help me with this? How is this diagnosed? Any additional thoughts on my symptoms would be greatly appreciated.
Thanks for the very informative article!!!
Hello, think you may have SS. Chronic dry eye, mouth and our friend Arthur make up secondary Sjogrens. Not sure the rest of your symptoms are related. They sound more like Methotrexate side effects. Folic acid should help control those symptoms. If you have SS, Metho will not help. Only for you RA. My recommendation is Restasis for your dry eyes. It is costly but works wonders. Eye plugs may help also. I have SS and it really s...s! The eye pain and burning is unbearable. However, your problems may be due to a lack of disease control. Maybe you need another medication that you don't get so many side effects from, although is it helping your joints? I have been fortunate to not have any side effects from Metho, just hair thinning which I started folic acid for that and the prolem is solved. I am taking 20mg per week and just recently started to feel pretty good. Good luck with your findings! Also, Happy New Year!, Pamela
Hi Rena,
So sorry to hear of your extra symptoms. I don't know if these could all be caused by Sjogren's or not. Here are some links which take you to more information about testing and diagnosis: here, here, and here. Obviously, we need another post which focusing only on these things.
It can be complicated when our symptoms are POSSIBLE side-effects from some powerful drugs, or when they could be another disease developing. I suggest that you bring up your concerns with your rheumy. Many of the tests (blood tests) overlap in use for RA and SS, however there is an SS antibody test. Good luck and let us know what your doctor says.
PamelaO,
Thanks for your suggestions. It sounds like Restatis and eye plugs really do help some Sjogren's patients. That is very good to know.
I take methotrexate and do not experience the mouth sores or upset stomach like some do, fortunately. I've had some hair thinning, but most obviously after having several days of Solumedrol (steroid) infusions for my MS. I was losing clumps of hair for many months. Folic acid didn't seem to slow this down (unless it would have been much worse without it). Just last week noticed lots of short new hairs on the top, yippee!! Ah, the vanity of living with autoimmune diseases (speaking for myself, of course).
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Another excellent post for the reference area!
And also another one of those "wait, I have many of those symptoms" moments. But it's the biologics - in my experience, they dry you out until you're dusty!
Thanks Lene! I added a little paragraph at the end to reflect the possible dusty side-effect of some drugs. Should have thought of that.
We don't need people worrying that they are developing Sjogren's when it could be the biologics. But which ever is the case, it is always smart to talk to your rheumatologist.