Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Ask the Expert: Sjögren’s & Lymphoma

Posted on Fri, Oct 30, 2015

Question_and_Answer "I know as a patient with Sjögren’s I am at a higher risk for Lymphoma, is there anything my dentist could be on the lookout for to help catch it early?"

 This is true; patients with Sjögren’s have an increased risk for developing lymphoma. Most commonly, the lymphoma associated with Sjögren’s is low-grade non-Hodgkin’s B-cell in nature. Visiting a dentist regularly, at least twice a year, is essential, as early detection may affect treatment.

What does lymphoma in the mouth look like?

  • The tumors associated with non-Hodgkin’s lymphoma usually present as non-tender, slow growing masses that may arise in several areas of the body including the neck or the oral cavity. In the mouth, lymphoma presents as a diffuse, non-tender swelling that may be described as boggy. Occurring with higher frequently in the gingiva, posterior (closer to the throat) hard palate and buccal vestibule (the area between the gums, teeth and cheek), these masses are often red or blue-purple in color.

So what does this mean?

As stated earlier, visiting a dentist regularly and routinely is extremely important for early detection. Additionally, when visiting your dentist, make sure to tell him/her of your history of Sjögren’s. It is important that your dentist conducts a thorough and comprehensive head and neck examination, which includes palpating the cervical lymph nodes (lymph nodes in your neck) as well as lifting the tongue and assessing the lateral borders (teeth sides of the tongue), the hard palate, floor of the mouth, buccal vestibules, soft palate, gingiva and the remaining soft tissues in the oral cavity.

Is there anything I can look out for?

Yes. It is important to visit your physician if you notice a swelling in your neck that persists for more than two weeks. You should also visit your dentist if you notice a swelling in your mouth that remains for more than two weeks. As a rule of thumb, if you notice any lesions in your mouth that remain for more than two weeks, it is recommended that you visit your dentist.

by Lauren Levi, DMD, Dental Oncologist 

This information was first printed in The Moisture Seeker, SSF's patient
newsletter for members.

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Topics: Diagnosing Sjogren's, Dry Mouth, Sjogren's, Treatment, Swelling in the neck, Lymphoma, Sweling in the mouth

How I Found a New & Happier Life with Sjögren’s

Posted on Thu, Oct 15, 2015

My Sense of Humor is Dry, and so is Everything Else! I’ve always had a dry sense of humor coupled with an optimistic personality. But I must admit, when I was diagnosed with Sjögren’s, it took me quite a bit of time to go through the grieving process and create a bold life with my sense of humor intact.

I love those stories about people who are able to accept the diagnosis and immediately say, “Sjögren’s, I may have you but you will not have me.” That was not my experience. In fact, I found that that more I challenged my Sjögren’s, the more it did have me!

JanetLike all of you, I now can look back and pinpoint when I was presenting early Sjögren’s symptoms. My early symptoms began in 1997 as ongoing sinusitis and exhaustion. For a decade, symptoms escalated until I was hospitalized for two weeks.  Nine-months after my hospitalization I was finally diagnosed with Sjögren’s January 2007.

I was relieved to have the diagnosis and excited to look Sjögren’s in the face and tell it, “You will not have me! I am a fighter, an optimist, a model patient and I will knock you down.”

Although it turns out a fighting attitude was not what I needed and it took three years for me to find my way after my diagnosis. I was fighting Sjögren’s to regain my “old self” and my previous life. What I needed was to love and embrace my Sjögren’s in order to see my “whole self,” accept my previous life as a point in time, and find my “new self.”  After all, I was young with a lot of life in front of me. It was time to explore new aspects and add to the journey.

Here are my big revelations about what worked for me. Perhaps you can find some tips for yourself or for a newly diagnosed friend.

I embraced my disease instead of fighting it
Instead of imagining an internal army kicking the sh** out of Sjögren’s (as my friends who had successfully killed cancer had suggested), I found the imagery of embracing my Sjögren’s to calm it down was what finally did the trick. 

I think of my Sjögren’s as a small girl who is tired and acting out (and yes, I recognize the “inner child” similarity here). I finally realized that I was already attacking myself and launching emotional attacks to combat Sjögren’s was perhaps adding fuel to the fire.  So I tried the tender approach. To me, this was different than the adage “be good to yourself” or “be kind to yourself.” I imagined that the little girl dwelling inside of me was a separate person that I needed to care for. She is not mean or weak, she is in fact strong and confident, so she requires special attention.

If you are a person who tends to take care of everything and everyone around you, then this imagery might work for you too. After a few years of practicing this imagery, I now can take a short-cut and just “be good to myself.”

I didn’t make my world too small
There have been times when I focused mostly on Sjögren’s and what I could not do.  I found that my world started shrinking and became quite small. That was not the life I wanted so I had to train myself to think of all the things I CAN do. Along the same lines, I started asking the question “Why Not?” instead of “Why.” Try it, it’s a good practice!

Beauty & Nature Matter
I moved Sonoma, CA wine country in order to have natural beauty surround me. Not everyone can pick up and move, but everyone can take a nature walk. Be still in nature and soak in what you find beautiful.

I feel the same about the beauty and healing powers of music and art! I listen to new music and dance while making dinner almost every night. 

Work and productivity
For years, I managed my work time and stress by consulting on a project basis.Two years ago I co-founded a software company and was concerned about the workload, but I have been fascinated at how well I feel! I don't work the crazy hours of my youth, and I don't see that as a shortcoming.  I know my experience and wisdom (no longer sweating the small stuff) is more valuable to the company than extra hours. Even though I have periods of exhaustion, I’m actually feeling the best I have ever felt with Sjögren’s. 

Because I am challenged and doing something I believe I’m good at, I believe my Sjögren’s is better controlled. I do have to manage stress and discipline myself to not “power through” things, which makes me feel worse. But this is all part of taking better care of myself and knowing the right work-life balance. You might find that managing your best work-life balance can help you too!

“No” is a complete sentence and it’s ok!
If you are a person who has taken care of many people and many things, it’s time to look at that. Sometimes it’s a good thing and sometimes it crosses over into something else. Try letting go of the “something else.” It’s also time to let go of feeling bad about it! 

Be a Good Friend
My friends have had my back when I was not doing very well.  In fact, a couple of friends certainly gave more than they received for a few years. One day I asked myself “Would you want to be your friend?”  I didn't like the answer so I vowed to be a good friend to those I love. In order to do that, I had to relinquish a relationship that took too much negative energy so that I had positive energy for those who lifted me up. I still make new friends, but I manage my energy and time well.

Give Back to Something
Find what is important to you and give some time to it. Although make sure you are using positive energy and that you’re not pushing beyond your limits. I have several community things I support, but being on the Board of the Sjögren’s Syndrome Foundation brings me great satisfaction.  It combines three things for me. First, my desire to know more about the disease. Secondly, my desire to speed research for a cure. Finally, my desire to help others understand and deal positively with their Sjögren’s

I have been amazed at how much the SSF actually accomplishes on our behalf and I know we will accomplish our 5-Year Breakthrough Goal of shortening the diagnosis time 50% in 5 years. I am proud to be part of making that happen for our community! 

Sleep, Exercise, Food & Wine
Sleep is my best tool! I go to sleep when I’m tired and wake up when I’m ready. And exercise is something that always makes my joints feel better. 

I love food and wine. I feel my best when I eat an organic diet of fruits, vegetables and proteins, exercise daily and steer clear of carbs and sugar (which includes wine). But I live in wine country for goodness sake so I’m going to drink wine. I do so many things “right” so that I can enjoy a glass of wine when I like (preferably a really good Pinot Noir, with really good friends).

Today, I have my Sjögren’s in steady order by taking pretty good care of myself and making sure I balance all things in my life that define, for me, a bold life. Now I work smart and play smart. I do have daily symptoms that I stay on top of, but I simply accept them as part of my life now. Just like aging. And menopause. Good thing I’ve got my sense of humor back to deal with that!

This article was first printed in the The Moisture Seekers, SSF's patient newsletter for members.

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PS: I lifted the first line of this article from fellow SSF board member Dr. Herb Baraf, who at our last Board of Directors meeting stated, “The SSF, even our sense of humor is dry.”  Funny man!

Topics: Depression, Sjogren's, coping with sjogren's, Advocacy, 50in5: Breakthrough Goal

Ask the Eye Doctor: Why do my dry eyes hurt in the morning?

Posted on Wed, Sep 30, 2015

Q) Why do dry eyes feel awful in the morning when I first wake up, especially if I don’t use an eye lubricant at night?

Dr. Stephen Cohen

A) There are certain conditions that can get worse during the night with the eye in a closed state. For example, if you have blepharitis, which is caused by a common skin bacteria called “staph epidermidis,” the waste products of the staph are very irritating. But with your eye closed that staph toxin is lying there all night. If I have a patient who wakes up with really irritated eyes, one of the first things I want to look at is untreated blepharitis.

Another possible cause is called “recurrent corneal erosion.” Think about pulling a scab off all the time. It starts to heal and you pull the scab off. If the surface of the eye gets irritated through dryness and adherence to the back of the lid, or through an injury, that tissue needs to heal. The good news is it heals very quickly. The bad news is it hurts a lot as I’m sure you’ve found. So it heals quickly but it doesn’t necessarily anchor itself. That thin, outer layer of the cornea doesn’t anchor itself to the eye very fast, so you run the risk of re- irritating your eye even after you are feeling better. And when you do that over-and-over, it is called “recurrent corneal erosion.” You are basically tearing off the outer layer of the front of your eye. Classic sign is you wake up, you open your eyes and it hurts. Using ointments at night helps. Using an antibiotic ointment would help if you have blepharitis as well because it would treat that and give your eye a little more coating.

Dry Eye Tip!
If you have severe dry eyes and trouble opening your eyes in the morning because your lid is sticking, try to keep your eyes closed when you wake up and use the heels of your hands to gently massage your lids. What this will do is break any of those adhesions that may be there and it stimulates a little tear production so that you can actually open up your eye safely. But if you wake up and open up your eyes right away, you run the risk of – ouch – pulling that adhesion off, again, like pulling a scab off of a wound.

-Stephen Cohen, OD from his talk on Dry Eye at the SSF National Patient Conference

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Topics: Dry Mouth, Dry Eyes, Sjogren's, Joint Pain, Fatigue, Treatment, Blepharitis

Natural Herbs & Spices That Alleviate Dry Eye Symptoms

Posted on Fri, Aug 28, 2015

spices-1Could alleviating dry eye pain be as simple as spicing up your life a little bit? (No, don’t cue Victoria Beckham- we mean that in a literal sense!) There are plenty of natural herbs and spices that are full of dry eye fighting antioxidants. In fact, you might even find dry eye relief in your own spice cabinet! Intrigued yet? We thought so. Behold, some of the best natural herbs and spices to help prevent your peepers from drying out:

This wonder spice was a hit with our dry eye prone friends. Sometimes known as curcumin, turmeric is an Asian spice that is protective against a number of diseases (including dry eye!). However, there’s a catch: turmeric is not always easily absorbed. Experiment with this natural anti-inflammatory anyway- it may help reduce oxidative stress. (P.S. One of our Facebook friends shared her go-to hot beverage for dry eyes a few months back. Try Janice’s recipe: Warm up some almond milk, sprinkle a tsp of turmeric, ½ tsp cinnamon and 1/8 tsp cloves. Finish with a dollop of raw honey. Whisk together and voila, an inventive {and delicious} way to incorporate turmeric into your diet!)

Paprika has an extremely high concentration of vitamin A, which is great for warding off dry eye symptoms. Other good news about paprika, it’s an extremely versatile ingredient- and just about everyone has it sitting in the spice cabinet. Try using paprika next time you cook. It’s awesome for boosting flavor- and nutrition! Get a dose of paprika by sprinkling it on potato salads, fish, chicken and eggs. 

You may have already heard that bilberry, a shrub closely related to the blueberry, is great for overall eye health and retinal diseases like macular degeneration. Well, it’s also particularly beneficial for dry, itchy eyes. Extracts from the bilberry fruit help to improve blood circulation, oxygen supply and tear gland function. Additionally, bilberries contain vitamin P and citrin, both of which help to decrease swelling and inflammation in the body; a common dry eye trigger. Experiment with bilberry supplements or tea made from bilberry leaves. However, be careful not to over indulge. Ingest no more than 220 mg of bilberry per day.

Next time you’re tempted to rub those itchy, stinging eyes, try a spearmint eyewash instead. Simply boil about 10-12 leaves of spearmint in some water. Wait until the solution cools (at least 20 minutes!) and then use a clean face cloth to apply the wash to your eyes. Menthol, the active ingredient in mint, actually stimulates tear production and will leave your eyes feeling energized and refreshed. Plus, it smells amazing! Win-win.

Chamomile is known for its cooling and anti-inflammatory properties. It soothes tired eyes and can help restore moisture. Another bonus? Drinking chamomile tea makes you feel sleepy and prepares you for rest, so it’s the perfect drink to sip on after a long day.

So, there you have it; options for natural dry eye relief. Of course, the above mentioned are merely a few of the wondrous herbs and spices that can alleviate dry eye pain.  Other potential dry eye fighters include thyme, fennel, marigold and calendula.

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This article is a reprint from, which is sponsored by TearLab Corporation and first shown by the SSF in “The Moisture Seekers,” SSF’s patient newsletter.

Topics: Sicca, Dry Eyes, Sjogren's, Treatment

Sjogren’s Health Insurance Reimbursement 101

Posted on Tue, Aug 11, 2015

The Sjögren’s Syndrome Foundation (SSF) knows that obtaining healthcare and dental reimbursement can be a major challenge. Having Sjögren’s places a high enough burden on patients, and adding the barriers patients face in obtaining health insurance reimbursement increases that burden greatly. These tips below should help you increase your chances of success when requesting reimbursement and appealing denials for a claim. 

Tips for Health Insurance 

SSF_Health_InsuranceKnow your insurance policy and what it covers.
  • Note whether prior authorization is needed for a specific therapy or procedure.
  • Understand co-pays and how much you will be expected to contribute to the cost.
  • Know whether your insurance company requires “step therapy,” which means you must try and fail one therapy before the next level of therapy can be covered. 
Make sure your medical records are accurate.
  • Maintain copies of your medical records. You have the right to receive copies of all of your medical records. Note that you can be charged a copy fee.
Include a Letter of Medical Necessity.
  • A Letter of Medical Necessity is usually written by the physician explaining why a therapy or other treatment is medically necessary. This can be included with an initial claim or included in the appeals process.
  • A Sample Letter of Medical Necessity for dental treatment can be found on the SSF website under “Brochures and Resource Sheets.
Know how your insurance company handles biologics if you are considering one.
  • Insurance companies can exclude a drug from coverage or it might be a “tiered” drug, meaning one that is designated at a certain level for how much the patient must cover.
  • If not covered, or if the patient coverage is too high, request an exemption along with an explanation about why you need the drug from your physician.
Always appeal denials!SSF_Apeal
  • Appeal a denial at every level. Most patients receive at least partial reimbursement upon appealing a negative decision from their insurance company.
  • Involve your doctor in helping you respond to a denial. 
  • Familiarize yourself with your insurance company’s guidelines and deadlines for appeal. This information is usually included in the denial letter.
  • Make sure you have the necessary documentation showing that your case meets the insurance provider’s guidelines and demonstrates medical need.
  • Maintain records of your communication with the insurance company and document every time you speak or hear from a company representative. Record the person’s name, date, time and key messages from the conversation.
  • Understand why you were denied, so you can address the reason(s) directly.
  • If you are communicating with the Customer Service office of the insurance company and are dissatisfied with the response, ask for a Nurse Case Manager or a Supervisor who might be more understanding of your situation.
  • When possible, demonstrate that treatment is more cost-effective than alternatives or non-treatment. 
  • If you are still denied following the final round of appeals, contact the advocacy or patient assistance program for the company that produces the therapy. Most companies have divisions that take applications for financial assistance for their therapies.

This information was first printed in the The Moisture Seeker, SSF's patient newsletter for members, and is one of the SSF Patient Education Sheets. 

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Topics: Sjogren's, Tooth Decay, Treatment, Punctal Plugs, Advocacy, Health Insurance Reimbursement

Ask the Doctor: Sjogren’s and the Benefits of Vitamin D

Posted on Tue, Jul 28, 2015

Q. I keep reading about the use of vitamin D with autoimmune diseases. How important is it for Sjögren’s patients? 

A. Vitamin D is important in bone and cartilage homeostasis. New evidence indicates that vitamin D may have extraskeletal benefits on several systems including the immune system. Autoimmune diseases such as systemic lupus (SLE), and Sjögren’s have been associated in a few studies with low vitamin D levels. However, the significance of low vitamin D levels in disease pathogenesis and prevention is unclear.

What are the sources of vitamin D? Vitamin D has two precursors, Vitamin D2 (ergocalciferol) and Vitamin D3 (cholecalciferol). Vitamin D3 is synthesized mainly in the skin by the action of ultraviolet light. Vitamins D2 and D3 are found in very few dietary sources, such as fish oils or fortified dairy products, as well as supplements.


Recommendations regarding desirable levels are based upon evidence related to bone health. Some controversy exists, but experts such as the International Osteoporosis Foundation suggest that a minimum level of 30 ng/mL is necessary to decrease the risk of falls and fracture. 

Vitamin D deficiency is very prevalent in the general population and some studies indicate a higher prevalence of vitamin D deficiency in certain autoimmune diseases. However, these studies have not been conclusive. As an example, in SLE patients, recent studies have indicated the prevalence of vitamin D deficiency to range between 38% and 96%. The wide variation can be attributed to many factors, such as the age of the patients recruited, geographic location, season at the time of the study, ethnicity, medications used and the accuracy of the vitamin D assay method used.

In Sjögren’s, few small trials have been performed to assess the prevalence of low vitamin D levels and the association with disease severity. No conclusive data has been assembled to indicate that subjects with Sjögren’s have lower vitamin D levels than healthy subjects, or to suggest a pathogenic relationship between lack of vitamin D and development of disease.

Patients with Sjögren’s can be prone to vitamin D deficiency. Photosensitivity, where exposure to ultraviolet light triggers a rash is prevented by avoiding exposure to sunlight, could contribute to lower levels of vitamin D. Furthermore, certain medications may aggravate vitamin D deficiency. Chronic corticosteroid and hydroxychloroquine use are suspected to affect vitamin D concentration and activity respectively. 

In summary, although there are no guidelines regarding optimal vitamin D levels for extraskeletal and immune system health, it would be reasonable to recommend that patients be screened for vitamin D deficiency and treated with supplementation. The American College of Rheumatology recommends a daily intake of 800–1000 IU per day of vitamin D in patients on treatment with steroids.

by Stamatina Danielides, MD

 This information was first printed in the The Moisture Seeker, SSF's patient newsletter for members. 

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Topics: sun and sjogren's, Diet, Nutrition, Sjogren's, Sun Sensitivity, Vitamin D, Lupus

World Sjogren's Day is July 23!

Posted on Wed, Jul 15, 2015

SSF_World_Sjogrens_DayHappy Birthday Dr. Sjögren's!

World Sjögren's Day was created to commemorate the birthday of Dr. Henrik Sjögren, the Swedish ophthalmologist who discovered Sjögren's in 1933, which has helped all patients find answers to their health questions.

This July 23rd, the Sjögren's Syndrome Foundation (SSF) joins with other Sjögren's organizations around the world to celebrate the 6th annual World Sjögren's Day and what would have been Dr. Sjögren's 116th birthday. World Sjögren's Day also allows us to recognize advancements made in Sjögren's this past year and the incredible progress the SSF has made on behalf of Sjögren's patients.


Sjögren’s (SHOW-grins) is a chronic autoimmune inflammatory disease in which people’s white blood cells attack their moisture-producing glands. Four primary symptoms include fatigue, joint pain, dry eye and dry mouth, but Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system.

World Sjögren's Day creates an ideal opportunity for you to talk about Sjögren's with the people in your life and provide much needed awareness for this common yet little known disease. By sharing your story, you are helping share the message that Sjögren's is a serious and life-altering disease and it deserves to be recognized.

Together we can transform the future of Sjögren's!
Learn more about World Sjögren's Day   & how to create a personal fundraising page!

Topics: Diagnosing Sjogren's, World Sjogren's Day, Sjogren's

The Sun & Sjögren’s: How to protect yourself

Posted on Tue, Jun 30, 2015

Sjögren’s patients, and those suffering from autoimmune disease in general, need to be cautious about their time in the sun. Ultraviolet (UV) radiation emitted from the sun and other light sources (such as some fluorescent lights) can alter immune function and lead to an autoimmune response in the body and skin.

In response to the sun, Sjögren’s patients can experience skin rashesocular sensitivity, pain, and disease flares. Sun sensitivity with Sjögren’s is associated with the autoantibody SSA/or Ro. Below are a few tips to help protect yourself this summer and year-round. 

  • Protect your skin and eyes through use of sunscreen, UV-protective lenses/sunglasses, ultraviolet light-protective clothing, hats, and non-fluorescent lighting. Sun-protective clothing is designed to protect your skin from UVA & UVB rays and is more reliable than sunscreen.
  • SSF_Sun_and_Sjogrens_TipsConsider purchasing UV-protective car and home window tinting and films (which come in clear.)
  • Wear sunscreen on areas not covered by sun-protective clothing, such as the neck and ears.
  • Read sunscreen labels and look for the words “broad spectrum,” which protects from both UVA & UVB light. Note that the SPF ratings refer only to UVB rays. 
  • Use plenty of sunscreen with a higher number SPF. Most people only use about 1/3 the recommended amount of sunscreen. This reduces the benefit of the SPF rating.
  • Remember to reapply sunscreen because water, humidity and sweating decrease sunscreen effectiveness.
  • Investigate whether UV-protective clothing and eyewear, window shields, and sunscreens are eligible for reimbursement under your insurance plan or Flexible Health Care Spending Account. 

The SSF would like to thank Mona Z. Mofid, MD, FAAD, for authoring this information that was first published in The Moisture Seekers, SSF's member newsletter, and as an SSF Patient Education Sheet

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Topics: sun and sjogren's, Symptoms, Sjogren's, Dry Skin, Top 5 Tips, Makeup Tips, Chronic Pain, Flare,, Ocular Pain, Skin Rashes

Top 5 Tips for Dry Skin

Posted on Thu, Jun 18, 2015

Dry skin often is overlooked as a major feature of Sjögren’s but deserves greater recognition as a frequent issue for patients. Dry skin can occur as the result of an immune dysfunction and destruction of the structures, which moisturizes and lubricates the skin – a process similar to that which causes dry mouth and dry eye in Sjögren’s

dry_skin1-1These skin structures include the hair and oil glands as well as sweat glands. Once destroyed, these oil and sweat glands cannot be restored. Although most common in fall, winter and early spring, dry skin occurs throughout the year. Areas most often affected are legs, arms and abdomen (especially the beltline/waist).

Your dermatologist can be your best resource and may be able to give you samples of products to try. Here are some basic dry skin survival tips that may help: 

  1. Use gloves when you are using strong soaps or chemicals to clean. One way to get in the habit is to keep a pair of gloves in several areas (i.e. kitchen, bathroom, garage).
  2. Terry robes will dry you gently. Or after the shower, let yourself dry naturally to let the water’s moisture be absorbed by your skin.
  3. Use warm, not hot, water for bathing and use soap sparingly (shampoo might also be drying to the rest of your body in the shower).
  4. After bathing, apply lotion as soon as possible to seal in moisture.
  5. Use a humidifier, especially if you have forced-heat, which is especially drying (For Sjögren’s patients, an optimal range of humidity is between 55% and 60% regardless of the ambient temperature). 

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Topics: Sjogren's, Treatment, Dry Skin, Top 5 Tips, Makeup Tips, coping with sjogren's

Ask the Doctor: What's an Immunosuppressant?

Posted on Sat, May 30, 2015

Q. I keep reading about immunosuppressants as a therapy for Sjögren’s. What is an immunosuppressant?

A. There isn’t a universally accepted definition of an immunosuppressant medication. In general, I think most providers would agree that a medication that has been shown to potentially increase the risk for infections in long- term studies would be considered an immunosuppressant. It is important to note that many, if not most, patients with Sjögren’s do not need or benefit from immunosuppression.


For certain patients, however, they can be very helpful. The most common immunosuppressant medications used for Sjögren’s include methotrexate, azathioprine (Imuran), mycophenolate (Cellcept), cyclophosphomide (Cytoxan), and biologic agents, such as rituximab (Rituxan). These are also used for many other related autoimmune diseases, and the effect of each medication on the immune system varies from blocking inflammation pathways to directly affecting white blood cells.

There is a common goal for all immunosuppressants: to put the disease into remission, or at the very least reduce the severity or frequency of symptoms and allow patients to avoid steroids. As with all medical treatments, the hope is that the benefits outweigh the risks. If not, then the dose is typically decreased or the medication is stopped completely. With the exception of certain cases, immunosuppressives are generally used to help provide symptomatic relief and not necessarily to prevent something bad from happening. So if an immunosuppressive is tried but doesn’t help after an adequate amount of time, it is usually stopped.

Hydroxychloroquine (Plaquenil®), a medication often taken by Sjögren’s patients, is not generally considered an “immunosuppressant.” While it does change or “modulate” the immune system in various ways, it does not lead to an increased risk of infections and does not require lab monitoring.

by Joseph Lutt, MD

This information was first printed in The Moisture Seeker, SSF's patient
newsletter for members.

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Topics: Plaquenil, Symptoms, Sjogren's, Treatment, Imuran, Immunosuppressant, Rituxan, Cytoxan, Cellcept

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