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

Balance and Sjögren’s

Posted on Thu, May 24, 2018

Balance Question_and_Answer

I seem to be having a lot of balance issues. Could this be related to my Sjögren’s? Are there any treatment options?

Poor balance is a risk factor for falling and warrants evaluation. 20% or more of individuals with Sjögren’s have neurological complications, many of which can impact balance. The most common is sensory neuropathy. Even in the absence of burning or tingling, careful examination may reveal loss of sensation in the toes. In an individual with poor balance, a physician will look most closely for evidence of loss of position sense. As the physician moves the patient’s toe up or down, an individual with neuropathy may exhibit no awareness of the direction of the toe. Walking in the dark or blocking ability to see one’s path (by carrying a laundry basket down stairs, for example) can greatly increase falling risk. Once a sensory deficit is discovered, other causes must be sought (such as diabetes or B12 deficiency) before the neuropathy is ascribed to Sjögren’s. Balance training may be helpful and behavior, which increases falling risk, should be eliminated (rushing, multitasking when walking, climbing to unprotected heights).

Other much less common neurological causes of poor balance in Sjögren’s include inflammation of the spinal cord (myelitis), which may result in both sensory loss and muscle spasticity, disorders of the cerebellum and inner ear, and autonomic neuropathy, which may result in inability to maintain blood pressure with standing.

The medication list should also be scrutinized for agents that may impair balance by lowering blood pressure, causing sedation, or damaging peripheral nerve function. If poor balance is present, alcohol use should be curtailed.

A consultation with a neurologist is advised because detailed evaluation of all portions of the nervous system may identify one of the less common causes of poor balance. Nerve conduction studies, MRI imaging of the brain and spinal cord, testing of inner ear function, and, rarely, examination of spinal fluid may be warranted. In instances of progressive sensory loss, immunosuppressive therapy with steroids or other agents, or intravenous immunoglobulin may be advised. Everyone with balance disorders should carefully evaluate the home environment to minimize falling risk. If there is a history of repeated falling, routine use of hip protectors should be considered and osteoporosis, if present, treated to minimize risk of fracture.

Lee Shapiro, MD, Albany, NY

Question_and_Answer
My provider recommended balance therapy. What is involved and how effective is it?

Balance therapy is most typically provided by a Physical Therapist and can encompass a variety of treatment approaches depending on what is causing the loss of balance. A thorough assessment by your Physical Therapist can help to determine which treatments would be most effective. Balance therapy is used to reduce frequent falls, stumbling, vertigo, lightheadedness, difficulty walking steadily on level or uneven surfaces and motion sickness.

Balance is quite complex. There are three major systems in our bodies that constantly send balance information to the brain to be processed. Likewise, the brain is constantly receiving and processing this information and then sending a split second response to the body to tell it how to react and maintain balance. The first system is the Vision System. Vision is used to send the brain information about our surroundings. For example, if you are about to climb a flight of stairs, the vision system sends information to the brain to help prepare to position the body accordingly so that the foot is lifted higher to clear the step and weight is shifted to the opposite leg. Regular eye exams and using your prescribed glasses and contacts is an important part of keeping balance. Common balance issues caused by glasses include glare and distortion when changing between the focal points on bi or tri-focal lenses. Speak with your eye doctor to ensure your glasses are not causing a balance disturbance. Turn on the lights! Walking in dark or dimly lit rooms significantly reduce our ability to use visual feedback for balance. The second system, the somatosensory system, sends the brain information on what the body is feeling through receptors in the skin and joints. If you were to walk on a level sidewalk and then veer off onto a grassy hill, the somatosensory information sensed in your joints and skin would change. As a result the brain can tell the body how to adjust for the change to walking on an uneven and grassy surface. The third system, the Vestibular System, is located in each inner ear. It provides the body information about forces on the head so the body can sense speed, turns and direction of movement. It also coordinates eye, head and body movements so that we can focus on objects as we move. Balance may also be affected by musculoskeletal issues such as pain, weakness and poor flexibility.

The focus of treatment for a balance dysfunction is to challenge the body to perform balance tasks that will re-teach the brain how to process the information it receives. Time, patience and repetition is needed to be successful. Treatment will vary depending on what is causing your balance dysfunction. Some examples of treatment are listed below, however, there are too many treatment strategies to list all of them here. Disorders of the somatosensory system are treated with dynamic balance exercises that challenge balance such as sitting, kneeling or standing on varied surfaces (therapy ball, foam, rocker board, balance beam). Disorders of the visual and vestibular systems are treated with eye and head movement exercises known as vestibulo-ocular exercises. A specific disorder of the Vestibular System called Benign Paroxysmal Positional Vertigo (BPPV) is very successfully treated with a series of body and head positioning exercises. Musculoskeletal disorders are most typically treated with strengthening and stretching exercises along with manual therapy techniques and modalities (electric stimulation, ultra sound, kinesio taping, etc.). Pilates, yoga and tai chi and are three types of popular exercises that improve balance, strength and flexibility.

Does balance therapy work? Balance therapy does work. The degree to which it will improve your balance dysfunction is dependent on several factors. The physiological cause of the dysfunction may preclude total resolution of the symptoms, but an overall improvement in balance can be attained. The factors that you can directly affect for success are following your Physical Therapist’s recommendations, performing exercises as prescribed, being persistent, and following up with your doctor and physical therapist for program advancement. 

Linda Jung, MSPT

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

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Ask the Expert, Balance

April is Sjögren's Awareness Month!

Posted on Sun, Apr 01, 2018

30 Faces for Sjögren's Awareness Month!

With an estimated 4 million Americans suffering from Sjögren’s, both men and women of different ages and ethnicities, it is one of the most prevalent but lesser known autoimmune diseases. Sjögren’s is also not a “cookie cutter” disease and affects patients differently. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with it. 

Apriil SSF 2017

April is Sjögren's Awareness Month and using our 2018 campaign, “30 Faces for Sjögren’s Awareness Month,” we hope to help others visualize the vast impact of the disease.  Every day in April, we will be using one or more of our social media channels to educate people about Sjögren’s.

We encourage you to use April Awareness Month and our #ThisIsSjögrens social media campaign, as a way to talk about Sjögren’s. Every post is an opportunity to start a conversation about living with Sjögren’s and how it affects you. The more others understand, the more support you can find. And know that we at the Sjögren’s Syndrome Foundation are here for you!

Get Involved!

On behalf of the millions of patients living with Sjögren's, thank you for your support of the SSF and our mission. Together we are transforming the future of Sjögren's for all patients!

Click here to view our daily  April Awareness campaign on Facebook!
 

 this is sjogrens - 2018

Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas.

Topics: Advocacy, April Awareness Month, #ThisIsSjögrens, Sjögren’s

30 Faces for Sjögren’s Awareness Month 

Posted on Fri, Mar 16, 2018

AprilisSjogrensAwarenessMonth.jpg

30 Faces for Sjögren’s Awareness Month

#ThisIsSjögrens
 

With an estimated 4 million Americans living with Sjögren’s, it is one of the most prevalent but lesser known autoimmune diseases. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with it. 

April is Sjögren's Awareness Month and we hope you will join us in educating the public about this complex and debilitating disease. With our 2018 campaign, “30 Faces for Sjögren’s Awareness Month,” we hope to help others visualize the vast impact of the disease. Using the #ThisIsSjögrens hashtag, the SSF will highlight 30 people’s photos, along with a fact about how the disease affects his/her life.

Every day in April, the Foundation will post a different photo of someone who is living with Sjögren's or touched by the disease (you can be a patient, family member, friend, physician, researcher etc.). Along with the photo, we will include one fact from their #ThisIsSjögrens Questionnaire on our social media pages.

The 30 daily posts will each give one small glimpse into the disease, and by the end of April, we hope the collection of posts will show the seriousness and complexity of Sjögren’s.

Let Your Voice Be Heard!

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If you would like to submit your story as one of our “30 Faces for April Awareness Campaign” please email us your answers from the questionnaire below, and a picture of yourself, to tms@sjogrens.org with the subject line: “April Awareness Month 2018.”

Thank you for your support. Together we will make Sjögren’s a household name!


#ThisIsSjögrens Questionnaire
(Please email your answers and a picture of yourself to tms@sjogrens.org.) 

Name (The Foundation will only publish first names):

Email: 

Current age: 

Age when diagnosed (or What is your connection to the disease):

City/State:

How would you describe yourself in one word (teacher, graphic designer, stay at home parent): 

What are your top three most difficult symptoms to live with:

What do you wish people knew about your Sjögren’s: 

What’s your best Sjögren’s tip: 

Don’t forget to include a picture of yourself!

 

Topics: Advocacy, April Awareness Month, #ThisIsSjögrens, Sjögren’s

Valentine's Day Giveaway!

Posted on Wed, Feb 14, 2018

*****
Congratulations to our 2018 SSF Valentine's Day Giveaway Winners! The winners are Natalie K., 
Nancy D., and Sherri W. The Foundation has privately emailed the three winners.

Thank you to everyone who supported the SSF by participating in our giveaway! 
*****

 

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To celebrate the season of love this Valentine's Day, the SSF wants to Sjö how much we appreciate you by giving away three complimentary registrations to the 2018 SSF National Patient Conference! 

How to Enter:
To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2018. The Foundation will privately email the three winners on Tuesday, February 20, 2018. Winners will be picked at random and the registrations are only transferable through family members, which means your family can comment below to give you an extra chance at winning! Please email us at info@sjogrens.org with any questions. 

2018 National Patient Conference 
April 13-14, 2018
Hyatt Regency Aurora- Denver Conference Center
13200 East 14th Place Aurora, Colorado 

Presentation topics will include: 

• Sjögren’s Overview
• Joint Pain and Sjögren’s
• Oral Manifestations of Sjögren’s
• Lymphoma: Risk, Treatment and Prognosis
• Ocular Manifestations of Sjögren’s
• Transforming the Future of Sjögren’s Panel 
• 
And More To Be Announced

Click Here to View the 2018 SSF Conference Brochure with Schedule & Printable Registration Form

Topics: National Patient Conference, Sjögren’s

New Sjögren’s Clinical Trial Locations

Posted on Thu, Jan 18, 2018

Steven_Town_Hall.pngEveryday research is being conducted to unveil new medications, therapies and diagnostic tools for Sjögren’s and its symptoms.  By participating in a clinical trial, you will be helping to potentially uncover breakthroughs that will help Sjögren’s patients worldwide. 

Clinical trials are designed to add to medical knowledge and most importantly, the results of these trials can make a difference in the care and treatment of Sjögren’s patients for generations to come. New clinical trials are investigating possible future treatment options and the SSF is fully committed to the development of new therapeutics that will treat the entire disease, not just one symptom.

These Sjögren’s trials are starting to actively recruit patients and sites open all the time. I encourage you to click on the link below to visit our listing of clinical trial locations and contact the clinical trial study coordinator to learn more.

Together we will conquer Sjögren’s and transform the future of the disease, giving hope to all patients!

Click here to learn more about  current Sjögren’s clinical trials! 

Topics: Treatment, Clinical Trials, Sjögren’s

The Pros & Cons of using Fluoride for a Sjögren’s patient

Posted on Fri, Jan 05, 2018

“The recent SSF Clinical Practice Guidelines for Caries Prevention mentioned fluoride treatment but I’ve heard it’s a neurotoxin and can have negative health effects. What are the pros and cons of using fluoride as a patient?”

avaWuDDS.jpgThere are nuances to the statement that “fluoride is a neurotoxin,” which should be clarified. The statement should read, “fluoride is possibly a neurotoxin in the developing brain.” This statement is based on statistical studies using children living in non-industrialized areas with drinking water containing naturally occurring very, very, very high levels of fluoride. In fact, the fluoride levels were up to 10 to 16 times that which is allowed in drinking water in the United States. These studies suggested that the lower IQ’s found in these children were the result of neurotoxicity in the developing brain from ingesting high levels of fluoride. The average loss of IQ was approximately 6.75 points with a standard deviation of 15 points. Thus the average loss of IQ was actually within the measurement of error of IQ testing. It was generally acknowledged that each of these studies had deciencies including not mentioning if there were other contaminants in the ingested water (i.e., lead, arsenic, iodine, or other chemicals), which could also affect the developing brain. It is important to remember that most ingested substances can be TOXIC if ingested in excessive quantities over a specified amount of time.

My statistics professor would also stress, “correlation does not imply causation.” Just because drinking water with very high fluoride levels is correlated with a drop in IQ, it does not mean that drinking the heavily fluoridated water actually caused the shift in IQ and thus neurotoxicity. There are many examples, but consider the case of hormone replacement therapy (HRT) being shown to be correlated with a decrease in coronary artery disease (CAD). Further trials showed that HRT actually increased CAD! Reanalysis of the data suggested that it was actually a healthier diet and lifestyle that was reducing the CAD, not HRT. Whether fluoride actually causes neurotoxicity as measured by IQ has not been well defined.

It is important to note that the Sjögren’s Syndrome Foundation (SSF) recommendation for caries prevention suggests the use of a topical fluoride. A topical application of fluoride results in little to no measurable fluoride in the blood. The fluoride is not directly ingested. Consequently, it would not be possible for a topical fluoride, applied as directed, to result in consistently high levels of fluoride within the body to cause toxicity. In addition, the majority of Sjögren’s individuals are considered to have mature brains. That means they are not susceptible to any potentially neurotoxic effects resulting in a loss of IQ points. There are no cons to the use of topical fluoride in an individual who is highly susceptible to caries because of low salivary flow. The pro to the use of topical fluoride is that it can inhibit and even reverse the dental caries process. Fluoride works. And this statement is supported by close to a century of research and scrutiny.

by Ava Wu, DDS School of Dentistry Clinical Professor, University of California San Francis

Click here to view the SSF Clinical Practice Guidelines for Oral Management in Sjögren’s

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

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Tooth Decay, Clinical Practice Guidelines, Sjögren’s, Floride

Give the Gift of Hope!

Posted on Fri, Dec 29, 2017

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We at the Sjögren's Syndrome Foundation (SSF) are extremely proud of all that was accomplished in this past year and it is because of your generous support that we are able to achieve these accomplishments. Join us and take great pride in knowing that your support plays a vital part in making a difference in the fight against Sjögren's and provides hope to those living with this disease. 

The SSF strives every day to provide hope to patients and their families through our many initiatives. Hope moves us forward and helps transport us to a more promising place. A place where Sjögren’s becomes a household name, where physicians and healthcare providers know about Sjögren’s, and where there are treatments available for this devastating and life-altering disease.

As we approach the end of the year and more importantly, the season of hope, we reflect on what was a dynamic year in Sjögren’s and envision the many advancements and achievements that still lie ahead. We hope you will consider donating today and your tax-deductible year-end gift will help the SSF as we continue our work in the new year. 

Thank you for believing in us and our mission. Together we will conquer Sjögren’s and transform the future of the disease, giving hope to all patients!

Make a Donation Now

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We encourage you to share this with family and friends so they too can help by having the opportunity to support the SSF. Thank you!

Topics: Advocacy, 50in5: Breakthrough Goal, April Awareness Month, #ThisIsSjögrens

Methotrexate and its benefit for Sjögren’s patients

Posted on Wed, Dec 27, 2017

Question_and_Answer.jpgAsk the doctor: What is Methotrexate and what is its benefit for a Sjögren’s patient?

Methotrexate is an extremely important therapy for Sjögren’s and many other rheumatic and inflammatory diseases. Its predecessor, aminopterin was introduced in 1948 as a cancer treatment. By the early 1950’s small studies of aminopterin in patients with rheumatoid arthritis (RA), psoriasis and psoriatic arthritis demonstrated efficacy but the drug was slow to capture the interest of rheumatologists, perhaps because of the landmark discovery of cortisone, also in 1948, one of the first “miracle drugs.”

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In 1962 methotrexate, a modified version of aminopterin, was introduced. Both inhibited the enzyme folic acid reductase, but methotrexate was easier to produce, making it easier to meet the growing demand for its use in cancer treatment. Small, successful clinical trials of methotrexate for RA, psoriasis and psoriatic arthritis followed its introduction and the case for its use in these disorders slowly built. By the 1970’s methotrexate had become a mainstay in treatment of severe psoriasis and psoriatic arthritis treatment, and then in the 1980’s it was adopted as standard management for RA after large-scale clinical trials demonstrated compelling efficacy and reasonably good safety.

Comprehensive guidelines for treatment of Sjögren’s were recently published in Arthritis Care and Research. Methotrexate is prominently featured in these guidelines for the management of inflammatory musculoskeletal pain in Sjögren’s patients. It should be noted that the arthritis in Sjögren’s may be indistinguishable from that of RA and in some patients the overlap of these two dis- orders is considerable. Patients whose arthritis is poorly controlled with non-steroidal anti-inflammatory drugs (NSAIDs), low doses of steroids and Plaquenil (hydroxychloroquine) are often managed with methotrexate.

Methotrexate is usually taken just once a week in tab- let form. Some patients take it as a weekly injection. The dose is usually steadily increased during the first two or three months of treatment until a maintenance dose is reached. Patients notice a gradual and meaningful reduction of joint swelling, pain and stiffness as the drug takes hold. Improvement may be noticed as early as 6 weeks; the full effect tends to be appreciated at three months. Systemic complaints such as fatigue, weakness and anemia may all improve on treatment.

Side effects of methotrexate are varied. It is a drug that must be monitored closely by a patient’s physician. Common complaints consist of mouth sores, stomach upset, loss of appetite, fatigue or headache. Some patients notice mild hair loss, more of a thinning, usually more noticeable to the patient than to friends or family. Some patients develop a cough or low grade fever. Rarely, a pneumonia-like syndrome can complicate treatment.

Methotrexate can be irritating to the liver. Patients taking methotrexate should avoid drinking alcohol and need to have liver function tests performed by their physician on a regular basis. The bone marrow can be suppressed by methotrexate and blood counts need to be checked regularly as well. Use of the B vitamin folic acid is recommended for all patients taking methotrexate to reduce the risk of side effects.

Patients on methotrexate need to stay in close communication with their physician and should promptly inform their doctor about a cough, fever, mouth sores or loss of appetite.

Despite all of the concerns about side effects from methotrexate, this drug has been quite well tolerated by most patients. Most importantly, methotrexate is a very effective and life-altering therapy for many patients.

by Herbert S. B. Baraf, MD, FACP, MACR Clinical Professor of Medicine, George Washington University

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

Click Here to Receive our Newsletter  by Becoming an SSF Member

Comment below and let us know what questions you would like answered in upcoming issues of The Moisture Seekers.

Topics: Symptoms, Treatment, Methotrexate

Guest Blog: A Mother's Journey "Rise Up"

Posted on Tue, Dec 12, 2017

It’s difficult to describe in words the many emotions or the day to day challenges of being the parent of a child living with a chronic autoimmune disease.  Life for us was forever changed when our daughter was diagnosed with Sjögren’s. Yes, I know.  I had the same reaction.  Say that again?  How is it pronounced?  Can you spell it? And then, the next logical question, can you fix it?  The answer was no.

Tigers.jpgInitially, we felt a sense of relief at least being able to identify the bully that has been picking on our daughter and be able to call it by name – Sjögren’s.  We even walked out of the doctor’s office feeling hopeful the severe episodes that led to the diagnosis were just "one-offs" and moving forward with the prescribed disease-modifying drug would somehow return things to normal.  I suppose some would call this the denial period. We could not have been more wrong.  

Then there is the feeling of isolation.  A strange thing happens as time passes. The silence becomes deafening. I explain to myself that friends and family just don’t know what to say, so they say nothing.  Perhaps they think it causes us pain to talk about it. Or maybe they tire of hearing things just aren’t okay.  I really don’t know. My heart still longs to hear: "We are sorry you are going through this." "You are doing a good job." "You are doing your best." "This must be hard." Anything kind…anything at all. No matter how much time has passed, some spoken acknowledgment would rescue me from the deserted island we sometimes feel we are on. 

And while all of those feelings still ebb and flow and toss and tumble us, an inner strength has emerged, rooted in the deep love and respect we have for our child. It’s how we put on a reassuring face, whisper encouraging words, admire our little girl’s strength and determination and push for answers. 

We started doing research. We tried to "hack" what may have caused this and why our child?  And still there are no answers and no solace in the research.  Gradually, we realized that there is a new normal.  And what was, will no longer be.  We mourned.  We mourned the loss of what was a carefree and energetic child.  We mourned our helplessness and the powerlessness we felt that we don’t have the answers and we can’t fix what is wrong.  We wish and wish that we could take our child’s place.  She has her whole life ahead of her.  Why can’t we take her place? I’d gladly take my daughter’s pain so that she could return to a "normal" childhood, one that wasn’t filled with medications, doctor’s appointments, waiting rooms, labs, chronic pain, fatigue, disappointments and fear. I don’t think we will ever reach the acceptance stage.

Where are we now? Sjögren’s is a complex disease that significantly impacts our lives. She experiences nerve pain for months on end that would render many adults unable to function, yet she perseveres and pushes on while we continue to partner with physicians to ease it.  Our ‘normal’ now consists of a morning routine to help our daughter get of out of bed each morning.  We deploy heating pads, massage and medication to help her painful joints regain something approaching normal motion.  We talk about what she can and cannot do that day so that she can manage her pain or her crippling fatigue.  Sometimes it’s a school day. Sometimes it’s not – often times, it’s not. Already, four months into the school year, she has missed a month of school for illnesses or doctor’s appointments. Remarkably, she is still an excellent student and has not fallen behind. 

We encounter top physicians who admit they are just now learning about Sjögren’s and confide that the treatments they are recommending have no science or research behind them.  We, as parents, are forced to make decisions about medications with serious sides effects for which there are no long term studies. We weigh everything and ultimately decide that we would do anything to make her more comfortable, enjoy her day-to-day and do as much of what all the other kids are doing without hesitation. We try to remain optimistic that the medications are helping and slowing the progression of the disease and its numerous more serious complications. Essentially, we are guessing and performing trial and error to figure out what will work.

Funny how your expectations can shift.  We now wish for her to be happy above having good health. I continually voice my commitment to my daughter. I won’t stop advocating and I won’t stop searching for a treatment that works or for a cure. That’s why you see me on social media being as persistent as I am. I owe this to her. If I don’t fight for our little warrior, who will?

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This was originally posted on, Sharon Tiger Talks, where Sharon raised over $3,000 for the SSF on #GivingTuesday.Body .jpg 

Topics: Children with Sjogren's, #ThisIsSjögrens

Sjögren’s & Kidney Disease

Posted on Wed, Nov 29, 2017

by Philip L. Cohen, MD, Professor of Medicine, Temple University School of Medicine 

SSF TMS.pngAbout 5% of people with Sjögren’s develop kidney problems. In most of these patients, the cause is inflammation around the kidney tubules, where urine is collected, concentrated, and becomes acidic. The infiltrating blood cells (mostly lymphocytes) injure the tubular cells, so that the urine does not become as acidic as it should. This condition, called distal renal tubular acidosis, is frequently asymptomatic, but can cause excessive potassium to be excreted in the urine, and may lead to kidney stones or (very rarely) low enough blood potassium to cause muscle weakness or heart problems. Very occasionally, injury to the renal tubules can cause impairment in the ability to concentrate urine, leading to excessive urine volume and increased drinking of fluids (nephrogenic diabetes insipidus).

A smaller number of patients with Sjögren’s may develop inflammation of the glomeruli, which are the tiny capillaries through which blood is filtered to produce urine. This may cause protein to leak into the urine, along with red blood cells. Sometimes a kidney biopsy is needed to establish the exact diagnosis and treatment. Treatment options may include corticosteroids and immunosuppressive drugs to prevent loss of kidney function.

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

 Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member

 

Topics: Symptoms, Treatment, Immunosuppressant, #ThisIsSjögrens, Kidney Disease, Urine, Sjögren’s

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