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Conditions > Other Conditions > More Conditions > Sjögren’s Syndrome
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Sjögren’s Syndrome

In 1933, Swedish physician Henrik Sjögren observed that a large number of his female patients were experiencing dry eyes and mouths, along with their arthritis symptoms. The condition became known as Sjögren’s syndrome.

These are the medications used to relieve the dryness caused by the Sjögren autoimmune attack on the body’s moisture-producing glands.

Name: Cyclosporine ophthalmic emulsion
(Restasis)     
Dosage: One drop in each eye, twice per day, approximately 12 hours apart    
Special instructions: Single-use vials must be used immediately upon opening, and then discarded.    
Possible side effects*: Blurred vision; burning, pain, itchy or stinging feelings in eyes; discharge; foreign body sensation    
Be aware: Cyclosporine is an immunosuppressant. Do not use if you have an eye infection. Do not wear contact lenses while using this medication.

Name: Hydroxypropyl cellulose pellets 
(Lacrisert)     
Dosage: One pellet in lower lids, once or twice per day    
Special instructions: Place pellets in the lower eyelids. Adding artificial tears makes the pellets dissolve, creating and locking in moisture.    
Possible side effects: Blurred vision; eye pain; irritation or redness of eyes; light sensitivity; matting or stickiness of eyelashes; swelling of eyelids; vision changes    
Be aware: Carefully follow directions for inserting. Improper placement could cause corneal abrasion. Be careful when driving or using machinery.

Name: Cevimeline 
(Evoxac)     
Dosage: 30 milligrams (mg), three times per day    
Special instructions: Start with a low dose, and take after meals to minimize side effects. Allow six to 12 weeks of uninterrupted treatment before improvement is noticed.
Possible side effects: Changes in heart rate (rare); diarrhea; excessive sweating; nausea; problems with night vision; rhinitis    
Be aware: Do not take if you have uncontrolled asthma, chronic bronchitis, chronic obstructive pulmonary disease, significant cardiovascular disease, acute iritis or narrow-angle glaucoma. Let your doctor know if you take beta-adrenergic antagonists (beta-blockers).

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Tomi
29 Aug 2010, 20:53
I was diagnosed with Sjogren's 3 yrs ago chiefly by my opthomolgist whoprescribed restasis which wirked in approx 4 months now I use it as needed (typically 3-4 days in a row then I stabilize) recommended I visit a rheumatologist. I also visited my dentist who recommended using my night guard, glass of water at bedstand (I was waking up during the night to drink water at moisten eyes in order to cont sleeping.) My scare have been neck pain constant on r neck trapezius group - massage helps but not NSAIDS ARnica 30x seems to help 1-2 hours. Also alopecia areata which no one in my family has. The hair grow back thinner and dryer - but at least it grew back after 6 months.

When I finally saw the Rhematologist shen order all the above mentioned labs as well as an ACE level and chest x ray. All minimally elevated or negative. Yet the symptoms are lousy. I notice my symptoms worsen if I have a low grade virus or allergy season. My immune system doesn;t seem to shut off. I see the rheumatologist 1 x a yr, I find the specialist who manage the symptoms are more important. I have found a holistic MD who is the first one to say that we need to find the root of the issue. I am willing to try. Currently on multiple supplements - we'll see. Thank you all for contributing. I will add you in myt prayers.
Ruth
20 Aug 2010, 08:35
I was diagnosed with Sjogrens about 20 years ago. I was very lucky to have been seeing an Ear, Nose and Throat Specialist, and he caught it immediately. It was secondary to Arthritis, which had been diagnosed 10 years earlier. I did well for many years, with the dry mouth and eyes waxing and waning and the discomfort of the sore joints. I tried just about every anti inflamatory on the market, but they all bothered my stomach and I could no longer take any. That was my downfall, as after discontinuing them the pain and soreness were almost more than I could stand. The last year has been rough, I am 64 now and have also been dealing with the extreme fatigue. God continues to see me through, and without him there are days I would be very depressed. I have always been a very busy person, and this just slows me down. I don't want this to sound as though I have given up, because that is not true, I will every day to the fullest I can and be thankful for every one of them. God be with you all, and may he bless every one 0f you with all you need to see you through. I would love to email with others. Thank you for listening.
Sincerely Ruth
Tauna
18 Aug 2010, 04:15
Yes Marie,
I have Sjogrens,and also the leaky blood vessels that are lining the stomach. I have had Anemia for a long time, and they had to do a scope into the stomach to see what was going on. The blood vessels will seep blood into the stomach when they fill too much. It is something that needs to be watched, and I have not heard of a cure or at least they havenot done anything on me. They now know why I am Anemic, and have charted it in my records, I take large dosages of Iron because I do not store long-term iron. I am not very happy about doing this as I am uncomfortable taking the large dosage, but it does seems to help the fatigue. I was surprised to see your post and the symptoms that you have shared. T :)
marie cornel
05 Aug 2010, 10:14
i have had sjogrens for over 10 years, but within the last year i needed 3 blood transufusions and put on iron pills, as i do get so nasuated that last all day and vomiting. has anyone with sjogrens had these symptons? The Doctors could not find out where the blood was going, but one did say people with Sjogrens tend to have weak blood vessels located in their stomach which after years can start sipping out blood. Please let me no if anyone has experince this. thanks from marie
Keena Eddington
01 Aug 2010, 23:31
If you have Primary Sjogren's Syndrome Then please read this: I have had this disease for over twenty years, I am 41 now. I have a degree in English as well as Communications and I may be able to help you if we have some of the same symptoms. Do Not Let A Rheumatologist tell you that you do not have this. SEE AN OPTHAMOLOGIST!!!!!! An ENT and a DENTIST. They can diagnose you a whole lot quicker than a rheumatologist. Rheumatologists are guessers. They guess when they don't know, they tell you that you are depessed and you probably are as depression is highly associated with Sjogren's Syndrome, however that does not negate the fact that you still have the disease. I am not a doctor so I cannot give medical advice, however, I can tell you what has worked for me. My doctor prescribed low dose doxycycline for me as it is an MMP-3 inhibitor and stops tissue destruction. However, if you have another Connective Tissue Disease, then this therapy could be contra-indicated as if can cause drug induced SLE in some patients. Again, this is not medical advice, only what has worked for me. Your eye doctor will prescribe Restasis, Use It!!!! It can save your vision. Systane Preservative free eye drops are the best by far, your eye doctor will tell you this as well. They may not be right for you. You will know when you find "your" eye drop. It will cause a sensation of relief. When you have that feeling, you will know that you have found the eye drop that is right for you. Candies and gums with Xylytol can actually stop cavities from forming as well as increase saliva prodution.

Nivea lip moisturizer is by far the best product on the market for dryness of the lips. Keep skin glue handy for the winter when your hands crack open. It will stop the from cracking further and prevent infection. If this does not feel comfortable to you, then clean the skin and apply petroleum jelly into the crack and cover with a bandage. Besure to change the bandages daily and clean the skin to prevent an infection. This is what I have to do as I contracted Staph in my eyes, scalp, nose, ears adn feet. Again, this is not medical advice, I can only tell you what worked for me.

If you don't make earwax, which I don't, you may think that you have swimmer's ear because fluid will run out of your ear all the time a have a strange smell. It is most like eczema of the ear canal. There is a steroid ointment for this and it will keep you from having a chronic ear infection.

The scalp, This one I'm still working on...... Haven't got it down yet. This is the hard one, especially if you are female and blow dry your hair or use a lot of styling products. God blessed me with naturally curly hair, so I can't blow dry mine. I have to let it air dry so I don't have the problem of heat irritating my scalp.

God Bless You All....... Please know that he is walking with you each step of the way, you can't see him and you may not feel him but I promise you, beyond a shadow of a doubt, that he is either right beside you or carrying you..... just let him.

-KBE
Lynn
20 Jul 2010, 18:17
I was diagnosed with Sjogrens with Lupus overlap five years ago. I also had it for years and never knew that the strange things going on with my teeth, vision etc had a name. I have been lucky to find a doctor that understands that not every one follows the text book. There are some of us that are
unique and will test positive for ana, ssa and ssb and then will go negative for awhile.
Any doctor that tells you nothing is wrong, its all in your head or you test negative and therefore don't have it needs to stop taking the text books as law. And you should look for a new doctor.
Autoimmune diseases are complex and overlap.
Don't stop looking for answers.
Marjorie Lespinasse
14 Jun 2010, 11:18
I have been diagnosed with sjogren's in january after a blood test.my question is I know people have different symptoms, my main concern is the stiffness of my neck, difficulty swallowing, pain in my lung.my doctor send me to the lab for a lung xray but the result was ok the doctor said may it the connective tissue around the lung whose batter me because you know when you hav sjogren's it affect all your vital functions.lung, liver kidney, pancreas etc.If there's some one who is watching me right now who can tell me whart to do for my neck I will be happy.The feeling that I have in my neck is like my neck is going to explode, I have lymph nodes all over my neck difficulty swallowing and it hurts a lot I am scared of lymphoma.Please if someone is listenning to me right now please I need some advice because it's very difficult for me and also if a doctor it's watching please help me God bless.
Joe
08 Jun 2010, 23:41
Ummmm.... for those who are talking about blood tests (or their doctor is talking about blood tests): absolutely none of this is definitive. There are few, if any, markers that are 100% sensitive and specific for a particular autoimmune disease.

So a doctor saying you don't have a condition because a blood marker isn't present is ludicrous, especially for a disease like sjogren's where the sensitivity for those markers is 30-70% (I don't recall the exact numbers, but neither are higher than 70%... that's a really low figure for a diagnostic test).
Ronni Herrick
07 May 2010, 07:07
I just had my rheumatologist send my bloodwork for testing for Lupus, Rheumatoid Arthritis and other stuff. I just wanted to say that I've had symptoms for years, I finally hit the internet and discovered I might have this condition. I also have osteoarthritis, scoliosis, and a little known disease my Mom and I inherited from our maternal grandmother called Fibromuscular Dysplasia. Please read about it at FMDSA.org as it is underdiagnosed and can lead to strokes, heart attacks and if children present with high blood pressure they probably have itin their rental arterie. We have it in our carotids, brain, etc. and have to be on blood thinners. We also have other connective tissue diseases so I guess everything is linked to it. I was told my eyes were very dry as is my mouth and other areas. I am hoping for answers as well as all of you.
dena rudd
23 Apr 2010, 17:05
I HAVE BEEN DIAGNOSED WITH SJORGENS , AND I HAVE BEEN VERY TIRED AND BODY ACHES,SWELLING AND SOME OF MY TESTS COME BACK VERY HIGH WITH MY LIVER,THYROID,I ALREADY HAD TUBES PUT IN MY TEARDUCTS STILL HAVE DRY EYES.I ALSO HAVE ALOT SWELLING IN MY NECK HAD SURGERY THEY HAVE TAKEN OUT 4 NODES TO CHECK FOR CANCER .. DOES ANYONE HAVE THESE SYMPTONS THIS BAD ????
Laura
21 Apr 2010, 00:32
Hi everyone. I am 28 and was recently diagnosed with Sjogrens and Ankylosing Spondilitis. I too am freaked out by all the things that might occur later on down the road like lymphoma, loss of vision, losing teeth, etc. My doc started me on Plaquenil, I've started using Bioten teeth products, and Oasis eye drops. I've been suffering for about 10 years, so I am thankful that I was diagnosed. However, I feel like this controls me... I don't control it. I'm trying to figure this all out. I can deal with the pain, but I can't deal with the fatigue. I hate waking up exhausted.
Barb Stanfield
24 Mar 2010, 13:29
this sjogren's is hard on a person my mouth burns when i eat some foods sometimes i cant taste what i eat. Mouth gets so dry.
carole
20 Mar 2010, 14:11
I don't think that having Sjogren's means you will definitely get a lymphoma but we have an increased risk. The types of lymphoma seem to be treatable but I must admit, with a young family, this is one of the things that has alarmed me. Also, the blurred vision thing. Mine blurred vision is still the same in right eye. I did read that it can be a symptom of dry eye so I have increased the frequency of using drops and use a more viscous type. I don't think it leads to loss of sight but I read some people have to 'cope with' blurred vision.
Carole
But I also read somewhere it can be temporary. I really hope so.
Kathy Hughes
04 Mar 2010, 21:06
I was diagnosed with Sjogren's Syndrome about a month ago by my Rheumatologist. My blood tests confirmed it. I'm tired alot and ache all over most of time. What scares me is I'm having a hard time seeing because my vision is always blurred. Will i loose my eyesight? Also, everything i read about this disease scares me because it refers to lymphomia. Will I be fighting off cancer too.
carole
22 Feb 2010, 14:27
I have been diagnosed with sjogrens for two years nad had symptoms for nine. I have just developed blurred vision in my right eye. I have had possible causes investigated by an ophthalmologist but nothing has shown. Does anyone know if it can come on fairly quickly like this in sjogrens and whether it might go away again or what to do about it?
Many thanks
Carole
barb whitcomb
19 Feb 2010, 17:03
Hey listen to all of you who have Sjogrens Syndrome------unless you have been diagnosed by a rheumatologist with this disease, than you have absolutely NO IDEA what we go through on a daily basis. You have no idea how hard it is to put up with the dry eyes, the dry mouth, your teeth falling apart for no reason, and the joint stiffness and joint pain that goes along with it. I was diagnosed with this awful disease about 2 years ago and I thought that I was just getting old with all of these crazy symptoms! But thank God for my family doctor noticing something wrong with my blood work and referring me to a rheumatologist. Because if it weren't for my doctor, I'd be losing even more teeth for a reason unbeknownst to me!! But thankfully now that I've been put on 2 different types of medication specifically for Sjogren's syndrome, my symptoms have been well controlled.
mary
27 Nov 2009, 08:44
I have dry eyes. My eye doctor said to take a fish oil and a flax oil in the morning and evening.

It also keeps my cholesterol in check. Even beter than eating fish as there are no pcbs in the capsules.
Rose
07 Nov 2009, 23:48
Sara
Thanks for the reply. All info is accurate. RA is negative, however. Recently, since posting, my oral surgeon performed lip biopsy, and report came back positive for Sjogren's. Yrs ago, opthamologist did Shirmer's test. Results - no. 4 in one eye and no. 5 in the other. Dr's reply: "Just about as dry as the eyes can be." Yet my Rheumatologist denies that I have anything going on because I don't have positive ANA, SSA nor SSB.

My next step: Opthamologist for retesting.
Lisa
15 Oct 2009, 12:27
Regarding Restasis, I have been on it for a few weeks now and also complained about stinging and burning about 10 minutes after inserting the drops. My doctor has recommended that I use artifical tears about 10-15 minutes before using the Restasis and keeping the Restasis cold in the refrigerator. As for why they give so much in one vial for single use, beats me, but I have put the cap back on my vial and used the same vial for 24 hours without a problem. It contains no preservatives so once the air gets at it, it is no longer "sterile", but so far I have had no problems getting 2-3 applications out of it. Of course I am sure that the manufacture would probably frown upon that, but it is my personal choice.
Angil
05 Oct 2009, 21:52
There are specific tests for Sjogrens. A diagnostic saliva study and a lip biopsy can confirm Sjogren's.
Hillary
07 Sep 2009, 15:26
@Rose

I've had severly dry eyes since '99 and only just tested positive for anti SS-A antibody on the ANA profile this year. My rheumatologist said you can have the symptoms for years and never test + for the markers. Good luck.
Judy
13 Aug 2009, 15:01
Restasis is an ophthalmic emulsion that is dispensed in single-use vials. Although some ophthamalogists may tell you that you can reuse an open vial, the manufacturer states differently. That is because the vials do not contain a preservative. Once the vials are opened, they can become a medium for infection.
Sarah
03 Aug 2009, 18:55
@Rose:

Are you sure all the things you've listed are accurate? If you have arthritis, then you're doctor must have taken something called a Rheumatoid Factor (RA). An RA is one of the tools used to diagnose Sjogren's. If it was positive, you meet one of the diagnostic criteria of Sjogren's. Although a high ANA is (usually) indicative of an autoimmune disease, it is not 100% reliable. If you're doctor didn't tell you this, he has more to explain than you might have initially thought. After all, as my own rheumatologist told me, there are plenty of people walking around with high ANAs, despite not having any autoimmune diseases. The same, though rarer, will sometimes occur in those that actually do suffer from an autoimmune disease.

P.S. In case you didn't know, Henrik Sjogren, the man who discovered the namesake disease, actually studied arthritis-stricken woman that all shared these "dry" symptoms. In fact, from what I've read, Sjogren's usually appears as a secondary autoimmune disease, the first diagnosed being---you guessed it---arthritis. Tell that to your doctor. ;D
Rose
09 Jul 2009, 01:05
Have had fibromyalgia,arthritis,allergic pulmonary aspergillosis, lung nodule,severe allergies, asthma for many years, sinusitis, sinus surgeries x 6, dental issues-surgery,immplants, rashes,dry eyes/mouth, severe pain, many symptoms of auto-immune disease, yet ANA is NEGATIVE, so Dr doesn't take this seriously. Severe symptoms of Sjogren's and other auto-immune diseases. Are there any definative diagnosis besides the positive ANA?
Jeanellda Jupiterwala
24 Apr 2009, 09:13
My doctor told me to close the vial,the plastic top will pop back on and store in upright in cup in frig & use second drop in next application.
Nancy Gorman
22 Apr 2009, 18:08
I've been using Restasis for about 2 wks. The burning sensatiion is almost as bad as the dry eye symptoms. My eye doctor doesn't want to see me again for 3 mos. I don't know if I can put up with the burning. I'm wondering if I should see my primary MD. Maybe I have Sjorgen's Syndrome. I have dry mouth and arthritic pain. I read Mary Pugh's
comment, I was wondering why only use one drop when there's more left in the vial. Also, I didn't know anything about refrigerating the Restasis. Is that necessary?
Mary Pugh
21 Apr 2009, 15:32
I have just been prescribed Restatis. I want to know why I have to use one drop and throw the rest away when there is more than half a container left, a lid profided for the container and a stand to stand it up in for the refridgerator. I don't get it. What will happen if you use the rest of the container in the evening? What is the connection with arthritis?
Thank you,
Mary Pugh

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