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

Pregnancy and Sjögren's

Posted on Thu, Sep 06, 2018

Pregnancy and Sjögren's 

Nancy Carteron, MD, FACR
Senior Consultant, Rheumatology Immunology
Clinical Faculty, University of California San Francisco

Most women will conceive and have healthy babies. However, there are potential complications. Consulting your obstetrician (OB-GYN), rheumatologist, and possibly a high-risk OB (perinatologist) prior to conceiving or early in pregnancy is suggested.

Pregnancy and Sjögren's  image

Factors contributing to the ability to conceive:

  • Age
  • Primary ovarian failure
  • Endometriosis
  • Environmental factors (i.e. pesticides)

Potential pregnancy complications:

  • Congenital heart block (SSA/SSB
    autoantibodies; possibly RNP antibodies)
  • Neonatal lupus (rash)
  • Fetal loss
  • Intrauterine growth retardation 
  • Premature delivery
  • Recurrent pregnancy loss
  • Preeclampsia (phospholipid autoantibodies)

Know your autoantibody (blood tests) status:

  • SSA (Ro) and SSB (La) – higher levels may carry more risk
  • Phospholipid antibody (APL) – Lupus anticoagulant; IgG and IgM cardiolipin antibody; IgG and IgM anti-beta2 glycoprotein I antibody

Congenital heart block (CHB) – most serious potential complication:
  • First pregnancy 2 % risk
  • If previous child had CHB, risk increases 10-fold for subsequent pregnancy
  • Weekly Doppler fetal echocardiogram surveillance between the 18th and 24th weeks
  • Cardiomyopathy can occur
  • Management strategies, including fetal pacemaker available

Neonatal lupus (rash):

  • Autoantibodies cross the placenta, decline over several weeks, rash resolves
  • If previous child had neonatal lupus, risk increases 5-fold for neonatal rash for subsequent pregnancy

This article was first printed in The Moisture Seekers, SSF's patient newsletter for members. It is also available as an SSF Patient Education Sheet.

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Topics: Skin Rashes, Lupus, Sjögren’s, Congenital heart block (CHB), Pregnancy and Sjögren's

Hair Loss and Sjögren’s

Posted on Mon, Aug 20, 2018

Q. “I am starting to experience hair loss. Can this be connected with my Sjögren’s and what can I do about it?” 

A. Hair loss can be caused by a number of conditions including hormonal or genetic causes, medications, inflammatory conditions of the scalp, autoimmune disorders, or shedding of the hair that can occur after a change in health status. Patients with Sjögren’s can have hair loss, but their underlying Sjögren’s is not always to blame. A thorough history and physical exam by a dermatologist can help to elucidate the underlying cause of the patient’s hair loss and will guide treatment.

As Sjögren’s patients often have a concurrent autoimmune disorder it is important to confirm entities like cutaneous or systemic lupus are not the cause of the hair loss. Control of the underlying autoimmune disease is the priority in this case to improve the hair loss. If cutaneous lupus is present, topical medications, injectable medications, and sometimes-internal medications are needed. Significant illness or major life events, which can affect Sjögren’s patients, can produce a shedding of the hair called telogen effluvium that fortunately is self-resolving. Androgenetic alopecia, a type of hair loss that can be caused by genetic or hormonal factors, and is not related to Sjögren’s, can begin with a widening of the midline part of the hair. Topical minoxidil (Rogaine) 5% foam or solution is usually the first line treatment.

As a number of other conditions can also produce hair loss, I would encourage you to see your dermatologist to diagnose your type of hair loss and formulate a treatment plan.

Natalie Wright, MD, FAAD
Texas

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

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Topics: Treatment, coping with sjogren's, Lupus, Sjögren’s, Hair Loss

Sjögren’s Top 5: What Your Rheumatologist Should be Monitoring For

Posted on Tue, Oct 31, 2017


Daniel Wallace.pngPatients with Sjögren’s usually see their autoimmune treating physician several times a year. Mostly, they are rheumatologists, but can also be primary physicians, internists or subspecialists such as interested pulmonary or hematology doctors. In addition to taking a history, performing a physical examination, or drawing blood tests, are there things that should be specifically looked at or monitored for? This article reviews the top five items.

1. Is there evidence for extraglandular Sjögren’s?

Some people with extraglandular Sjögren’s may have interstitial lung disease, renal tubular acidosis, swollen lymph glands, or inflammatory scarring of the bile ducts (biliary cirrhosis). Being identified with extraglandular Sjögren’s usually warrants systemic immune suppressive therapy with agents such as azathioprine, methotrexate, cyclophosphamide or rituximab. The treating physician should use their tools to screen for the spread of Sjögren’s to new areas with imaging or laboratory testing, which allows one to be proactive and treat the disease early.

2. Screening for lymphoma

Over a 15-20 year period of observation, 8-15% of Sjögren’s patients develop a lymphoma. Screening for symptoms of early lymphoma include asking a patient about swollen glands, fevers, weight loss and new onset of fatigue. A physical examination can detect lymph nodes, evidence for a “wasted” appearance, or an enlarged spleen. I perform a serum protein electrophoresis (a $30 blood test) on my Sjögren’s patients every 6 months. Often, early lymphomas can be detected with the development of an extra protein on this determination, which is known as a “MGUS” or monoclonal gammopathy of uncertain significance. Most Sjögren’s associated lymphomas are of a specific variety known as “MALT” that, if identified early, responds well to treatment.

3. Looking for overlapping Sjögren’s

Sjögren’s patients can have features of other autoimmune conditions such as rheumatoid arthritis, inflammatory myositis, biliary cirrhosis, scleroderma, Hashimoto’s thyroiditis or lupus, while still being “mostly” Sjögren’s. These features may warrant certain anti-inflammatory interventions. This would include corticosteroids for inflamed muscles, drugs that promote more oxygen to dilate the vessels of the hands for individuals with Raynaud’s (often seen with scleroderma or lupus), approaches that halt the development of erosions (bone destruction) with rheumatoid arthritis (e.g., anti-TNFs), ursodiol for biliary cirrhosis, antimalarials for subacute cutaneous lupus rashes in anti-SSA positive patients or thyroid. Identification of a secondary autoimmune overlap can often explain symptoms that may be profound but are not a part of Sjögren’s.

4. Don’t unnecessarily treat Sjögren’s for symptoms that are not related

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Sjögren’s patients may have high blood pressure, depression and diabetes, as does 25% of the United States. Medications given for these conditions can make dry eye or dry mouth symptoms more severe. Treating such patients with anti-inflammatory medications or diuretics (water pills) is not advisable. Before altering one’s Sjögren’s medications or their environment, the physician should strive to rule out co-morbidities or co-existing circumstances that may seemingly worsen Sjögren’s symptoms. 

5. Screening for head and neck emergencies or ares associated with non-extraglandular Sjögren’s

Patients with Sjögren’s whose disease is confined to the salivary glands, eye, head and neck areas occasionally develop complications, which may mandate emergent treatment. These include acute inflammation of the parotid gland (parotitis, or Mikulicz’s syndrome, with either a stone or focus of inflammation, treated with corticosteroids), corneal ulcerations, blocked salivary ducts (affecting the mouth), and dental caries or abscesses. Most Sjögren’s patients see a dentist 2-3 times a year to get their teeth cleaned, and are often frequent return visitors to their otolaryngologist (ENT doctor). 

In summary, screening for the five features reviewed above, can prevent or promote early treatment of the overwhelming complications with Sjögren’s.

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

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Topics: Depression, Treatment, coping with sjogren's, Raynauds, Rituxan, Lupus, Lymphoma, Methotrexate

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.

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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. 

Click Here to Receive our Newsletter  by Becoming an SSF Member

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

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