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The thyroid is the gland in your neck associated with metabolism—the processes by which your body makes use of energy. Autoimmune thyroid disease is common in lupus. It is believed that about 6% of people with lupus have hypothyroidism (underactive thyroid) and about 2% have hyperthyroidism (overactive thyroid). A thyroid gland that is functioning improperly can affect the function of organs such as the brain, heart, kidneys, liver, and skin. Hypothyroidism can cause weight gain, fatigue, depression, moodiness, and dry hair and skin. Hyperthyroidism can cause weight loss, heart palpitations, tremors, heat intolerance, and eventually lead to osteoporosis. Treatment for both underactive and overactive thyroid involves getting your body’s metabolism back to normal.

Thyroid Hormone Replacement

Levothyroxine (Synthroid, Levothyroid, Levoxyl, Unithroid)
Liothyronine (Cytomel)
Liotrix (Thyrolar)
Natural thyroid (Armour Thyroid, Nature-throid, Westhroid)

Thyroid replacement is used to treat people with underactive thyroid, whether it is caused by autoimmune disease, radioactive iodine treatment, or surgical removal. The main medication used to treat hypothyroidism is levothyroxine sodium (Synthroid, Levoxyl, and Levothroid), a synthetic version of thyroxine (T4), a thyroid hormone your body produces naturally. Other medications are also available, namely liothyronine, a synthetic version of another thyroid hormone called triiodothronine (T3); liotrix, a synthetic combination of T4 and T3; and desiccated natural thyroid (natural thyroid hormone prepared from dried porcine [pig] thyroid). Since these medications simply supplement a hormone that is missing, the only real safety concern is ensuring that you take the right amount. Therefore, your doctor will need to regularly check your thyroid and TSH levels to make sure you are receiving the correct dosage.

Thyroid hormone stays in your body for a long time, so you will only need to take it once a day, usually in the morning. It is important to take this medication without food, because food can affect your body’s absorption of the hormone. In addition, remember to take your thyroid medication at the same time of day, and do not stop taking your medication without first discussing the decision with your doctor. Many people need to take thyroid medication for the rest of their lives.

Remember to tell your doctor about any other medications you may be taking, since certain drugs can interact with your thyroid medication. These include oral contraceptives, estrogen, testosterone, certain anti-seizure medications, cholesterol-lowering medications (statins) and some antidepressants. Certain foods can also interfere with your body’s absorption of thyroid hormone, including iron, calcium, and soy.

If you are pregnant or may become pregnant, it is perfectly safe to continue taking your thyroid medication. It is important for pregnant women to maintain appropriate levels of thyroid hormone in the body to provide the healthiest environment for fetal development. When you first learn that you are pregnant, you should contact your doctor so that s/he can check your thyroid hormone and TSH levels; these levels should also be checked once during each trimester.

Anti-thyroid Medications

Propylthioracil (PTU)
Methimazole (Tapezole)

Propylthioracil (PTU) and methimazole (Tapezole) are medications used to treat overactive thyroid. They work by slowing down the production of thyroid hormone and do not cause permanent damage. When taken appropriately, these medications can control hyperthyroidism in just a few weeks; however, the main problem with anti-thyroid medications lies with the fact that the underlying problem returns once they are discontinued. Therefore, many people are encouraged to seek more permanent treatments, such as radioactive iodine treatment or surgical removal. Side effects of anti-thyroid medications include skin rash, upset stomach, drowsiness, and a bitter aftertaste. Rare but serious side effects include sore throat, fever, chills, jaundice, decreased white blood cells, and liver disease.

Your doctor may also prescribe a medication called a beta blocker (a drug usually given for high blood pressure) to block the action of thyroid hormone in your body. While beta blockers will not change the levels of thyroid hormone in your blood, they will make you feel better by reducing some of the symptoms of hyperthyroidism, including increased heart rate, shakes, and nervousness. These drugs work within hours and may help to quell these symptoms before other drugs have a chance to take effect. However, speak to your doctor if you have Raynaud’s phenomenon (color changes in the fingers and toes with cold exposure), since beta blockers worsen this condition.

Like the erythrocyte sedimentation rate, the C-reactive protein (CRP) test measures inflammation. However, CRP usually changes more rapidly than ESR because it is made by the liver and secreted hours after the beginning of infection or inflammation. CRP plays a part in your immune response by interacting with your body’s complement system. The CRP is non-specific, meaning it cannot give your doctor information about where inflammation is occurring in your body. However, the amount of CRP can give an idea as to the degree of inflammation your body is experiencing, and it is used by doctors in lupus treatment to monitor flares and to assess how well your medications are working. It is important to realize, though, that a low CRP value does not necessarily mean that an individual is experiencing no inflammation; a low CRP can be seen in lupus patients with active inflammation. An elevated CRP can also be seen after someone has a heart attack, surgical procedure, or infection.

High Sensitivity C-Reactive Protein (HS CRP)
In apparently healthy individuals, studies have shown that C-reactive protein (CRP) can be an indicator of the risk of cardiovascular disease (CVD), since certain types of CVD, namely atherosclerosis, are known to involve inflammation. A high sensitivity test (high sensitivity C-reactive protein, or HS CRP) is used to evaluate this risk, because the level of CRP in the blood is low. The high sensitivity CRP is important because studies have shown that lupus patients have higher levels of atherosclerosis than the general population. However, the HS CRP can reflect many things in lupus patients besides lupus activity and/or one’s risk of heart attack.

For the HS CRP test, blood is taken from a vein in your arm and mixed with a substance called an antiserum. The antiserum contains a specific substance that is able to detect the CRP. The American Heart Association and Centers for Disease Control and prevention maintain that a high-sensitivity CRP of less than 1.0 mg/L suggests a low risk for CVD, 1.0-3.0 mg/L suggests an average risk, and a CRP above 3.0 mg/L suggests a high risk.

Sources

• “C-Reactive Protein.” Lab Tests Online. 29 April 2009. American Association for Clinical Chemistry. 12 July 2009 <http://labtestsonline.org/understanding/analytes/crp/test.html>.
• “Inflammation, Heart Disease and Stroke: The Role of C-Reactive Protein.” American Heart Association. 12 July 2009. <http://www.americanheart.org/presenter.jhtml?identifier=4648>.
• “Hs-CRP.” Lab Tests Online. 8 April 2009. American Association for Clinical Chemistry. 12 July 2009. <http://labtestsonline.org/understanding/analytes/hscrp/test.html>.

A complete blood count (CBC) is the most commonly performed lab test in the U.S. and is used to analyze red blood cells (RBCs), white blood cells (WBCs), and platelets. Many people with systemic lupus have abnormal CBCs. White blood cell counts can be low (leukopenia) due to lupus, immunosuppressive therapy, or the presence of a virus. High WBC counts may signal infection but also occur when individuals are on corticosteroids such as prednisone. Usually, your doctor will request that your white blood cell differential is also assessed as a part of your CBC. There are five types of white blood cells: neutrophils, lymphocytes, monocytes, eosinophils, and basophils. Each group of white blood cells plays a different role in the immune response. The white blood cell differential will measure whether these cells are present in your body in normal proportions, revealing information about certain deficiencies in your immune system. For example, both lupus and prednisone tend to lower an individual’s lymphocyte count.

In addition, a CBC will measure whether an individual’s platelet level is low (thrombocytopenia), indicating that either the bone marrow is not making enough platelets or that antibodies are attacking them. A complete blood count will also assess whether red blood cell counts are low. Low red blood cell counts can indicate anemia caused by bleeding, medications, “chronic disease,” autoimmune hemolytic anemia (breakdown of RBCs due to auto-antibodies), or a vitamin deficiency. About 40% of people with lupus will be anemic at some time during the course of the disease. The most common types of anemia are iron-deficiency anemia and anemia of “chronic disease.”

Sources

• “CBC.” Medline Plus. 10 Aug. 2008. US National Library of Medicine and National Institutes of Health. 12 July 2009. <http://www.nlm.nih.gov/medlineplus/ency/article/003642.htm>.
• “Complete Blood Count.” Lab Tests Online. 8 April 2009. American Association for Clinical Chemistry. <http://labtestsonline.org/understanding/analytes/cbc/test.html>.
• Nabili, Siamak. “Complete Blood Count (CBC).” MedicineNet.com. 26 June 2008. MedicineNet, Inc. 12 July 2009. <http://www.medicinenet.com/complete_blood_count/article.htm>.
• Wallace, Daniel J. The Lupus Book: A Guide for Patients and Their Families. 1st ed. New York: Oxford University Press, 1995. 61.

COVID-19 Appointment Information and Procedure Updates
Get the latest updates for all appointments and procedures at Johns Hopkins.

COVID-19 Appointment Information from the Division of Rheumatology

About our practice:

The Lupus Center specializes in the care of patients with Lupus and Antiphospholipid Syndrome.  It is our goal to provide excellent clinical care while seeking to better understand the causes, and ways to control both Lupus and APS.

The Lupus Center is run by Dr. Michelle Petri, who is an attending physician and full time faculty member at the Johns Hopkins School of Medicine.  She is Board Certified in Rheumatology.  In addition to clinical care, Dr. Petri is actively involved in clinical research.

Scheduling an appointment

Appointments can be made by calling (443) 997-1552 between 9:30am and 4pm Monday through Friday after you are approved as a new patient.

To become a new patient, the following is needed:

• Faxed copies of all the medical records since your diagnosis to 410-367-2371.
• Completed copy of the lupus center questionnaire
• A year-by-year health summary of your medical diagnosis, treatment and how you have done since the onset of your illness.
• Please arrive 60 minutes prior to your appointment to allow time for pre-registration.
• Bring a list of all present medications (include names and dosages).
• Bring your insurance cards.

If you are a returning patient:

• Please arrive 30 minutes before your appointment.
• Bring a copy of your insurance cards.

Rescheduling Appointments and Cancellations:

Our clinic is very busy and unfortunately patients often have to wait several months for an appointment.  If you need to reschedule, please call us at 443-997-1552 at least two working days in advance. This will allow us to schedule another patient who is waiting to be seen.  Failure to come to three follow-up appointments will mean we are no longer able to schedule future visits.

Late, Canceled and No Show Appointments

Late: The appointment time scheduled for you is time specifically allotted for your visit. If you are running late for an appointment, please call our scheduling office. Please note if you are more than 15 minutes late for your scheduled appointment time, we may not be able to accommodate your visit.

Canceled / No Show: If you are unable to keep your appointment we require a minimum of 24 hours’ notice. If you repeatedly do not provide our office with 24 hours’ notice, you may be subject to be discharged from our practice.

Office Hours

Our normal clinic hours are Monday – Friday 7:30am-5:00pm. Our normal phone hours are Monday – Friday 9:00 AM -4:00 PM.

Our Office is closed for the following Holidays:

• New Year’s Eve
• New Year’s Day
• Martin Luther King, Jr. Day
• Memorial Day
• Independence Day (July 4th when it falls on a regular business day, the Friday before when it falls on Saturday, or the Monday after when it falls on Sunday)
• Labor Day
• Thanksgiving Day
• Day after Thanksgiving
• Christmas Eve
• Christmas Day (December 25th when it falls on a regular business day, the Friday before when it falls on Saturday, or the Monday after when it falls on Sunday)

There may be other posted days that are closed due to divisional activities and/or professional development. That information will be provided on all divisional voicemails.

After-Hours, Weekends and Holidays Calls

• If you are experiencing a medical emergency after-hours, please call 911 or go to your nearest urgent care facility or emergency department.
• If your need is a medical management question that cannot wait until our next business day, we offer an On-Call Provider to help you. Our On-Call Provider may be paged by calling our answering service at 410-955-6070.

Inclement Weather and Unexpected Closings

• It is the policy of Johns Hopkins Medicine to reasonably maintain outpatient clinical operations; however, due to weather or other unexpected closings, such as an area-wide power outage or water main break, there may be times when it is necessary to close our office.
• Our closing notices will be provided for you via our voicemail recording and our staff will contact you if we are not able to keep your appointment, let you know what we are experiencing, and when we may be looking to reschedule your visit.

Insurance / Billing Information

Please visit this site for important insurance information related to your visit.

Copayments:

It is a good idea to check with your insurance to make sure you are covered for your visit and services with us. Please be prepared to pay your copay and any balance due at the time of your visit. We accept VISA, MASTERCARD, DISCOVER, AMERICAN EXPRESS, and CHECKS.

Non participating insurance/self-pay:

We realize that insurance may not always cover care at Johns Hopkins. With the exception of Medicare Advantage and Medicaid plans, patients may have the ability to pay out-of-pocket for non-covered services. Patients scheduled for new patient appointments are required to pay a $600 deposit at the time of service. Patients scheduled for return visits are required to pay a $289 deposit at the time of service.

Prescription Policies and Prescription Refills

In order for our office to provide you with timely refills, please request your medication refills at least one week in advance. Refill requests may be made via a myChart message to your provider, calling our office, or by receiving a fax from your pharmacy.

Forms Completion

The only documentation regarding your health or illness required by law (and included in the office visit charge) is an office visit note. Completing paperwork for schools, camps, Family Medical Leave Act (FMLA) claims, long-term care, life insurance, the Department of Veterans’ Affairs, and other disability claims go beyond routine medical care and may require an update of your medical information or a special examination. In order to make this determination, please forward your form(s) to our office prior to your scheduled visit. For those forms that can be completed outside of a clinical visit, please allow a minimum of 5 business days for your completed form to be returned to you.

• Risedronate (Actonel)
• Alendronate (Fosamax)
• Ibandronate (Boniva)
• Zoledronic Acid (Reclast)
• Pamidronate (Aredia)
• Etidronate (Didronel)

What are bisphosphonates and why are they used in lupus treatment?

Bisphosponates such as risedronate (Actonel), alendronate (Fosamax), ibandronate (Boniva), zoledronic acid (Reclast), and pamidronate (Aredia) are used to treat and prevent osteoporosis—or, bone thinning—which occurs when the bones lose calcium and other minerals that help keep them strong and compact. This condition can lead to fractures, bone pain, and shorter stature. Everyone is at risk for osteoporosis as they age, and women experience a greater risk of the condition after menopause. However, studies have shown that people with lupus are at an increased risk for osteoporosis due to the inflammation they experience with the disease. Certain medications taken by lupus patients also increase the risk of osteoporosis, especially corticosteroids such as prednisone.

How do bisphosphonates work?

Your bones are constantly remodeling in a process that removes old bone cells and deposits new ones. In people with osteoporosis, the bones lose minerals faster than they can be regenerated. Bisphosphonates help prevent your bones from losing calcium and other minerals by slowing or stopping the natural processes that dissolve bone tissue. In doing this, they help your bones remain strong and intact. If you have already developed osteoporosis, these medications may slow the thinning of your bones and help prevent bone fractures (broken bones). In fact, studies have shown that alendronate (Fosamax) and risedronate (Actonel) can lower your risk of fractured vertebrae—bone segments that make up your spine—by 50%. Similar studies demonstrate that these medications can lower the chance of breaking other bones by 30-49%.

What are the usual doses of bisphosphonates, and what should I remember while taking these medications?

Most bisphosphonates are taken anywhere from once a week to once a month. All of these medications come in tablet form except for zoledronic acid (Reclast), which is given intravenously (IV) once per year. Both women and men may take bisphosphonates.

You should take these medications in the morning with a full glass of water at least a half-hour before eating, drinking, or taking other medications. Do not lie down for 30 minutes after taking the medication.

What else can I do to maintain strong, healthy bones and lower my risk of developing osteoporosis?

It is important for you to take other steps to help keep your bones healthy and strong. Exercise and movement are important for the health of your bones, joints, and muscles and may lower your risk of osteoporosis. Walking, stretching, yoga, and other activities will help ward off bone thinning and muscle loss. Studies have shown that people who live more sedentary lifestyles are at an increased risk of developing osteoporosis. In addition, your doctor will most likely recommend that you take calcium and vitamin D supplements while taking bisphosphonates, since vitamin D helps your body to absorb calcium. It is important that you also try to eat foods rich in calcium, such as milk, light ice cream/frozen yogurt, cottage cheese, pudding, almonds, broccoli, fortified cereal, oranges, yogurt, hard cheese, soybeans and soymilk, navy beans, oysters, sardines, and spinach.

Your doctor will most likely recommend that you get a bone density scan, or DEXA scan, every two years to evaluate your response to treatment.  The test takes only about fifteen minutes to perform and can provide your doctor with valuable information regarding the health of your bones.

What are the side effects of bisphosphonates?

Potential side effects of these medications include:
• Heartburn, stomach pain, and throat irritation
• Headache
• Muscle and joint pain
• Flatulence (constipation, diarrhea, gassy stomach)
• Dysphagia (difficulty swallowing)
• Pain or burning under the ribs or in the back
• Jaw pain, numbness, and swelling
• Dizziness, weakness
• Allergic reaction
• Reclast may be linked to an irregular heartbeat called atrial fibrillation.

In addition, some people have reported problems with bone healing (specifically, osteonecrosis of the jaw), especially after dental extractions or implants. Talk to your doctor if you plan to have this sort of treatment, since she/he will most likely recommend that you stop taking these medications before the event and begin taking an antibiotic. Also talk to your doctor if any of the side effects you experience are particularly bothersome.

Who should not take bisphosphonates?

The following people should not take bisphosphonates unless your doctor approves the treatment:

• Pregnant women or women planning to become pregnant
• People with severe kidney problems
• People with esophagitis (inflammation of the esophagus, the tube down which food travels from your mouth to your stomach)
• People who are currently taking parathyroid hormone (Forteo), although exceptions may be made.

Talk to your doctor if you have low blood calcium (hypocalcemia), a vitamin D deficiency, kidney disease, or an ulcer in your stomach or esophagus, since you may not be advised to use these medications.

What if I am taking other medications?

Certain medications can affect how your body deals with bisphosphonates. Your lupus treatment may involve several medications, but you should still tell your doctor if you are taking any other medicines—prescription drugs, over-the-counter medications, supplements, and vitamins—especially NSAIDs, such as ibuprofen (Advil, Motrin), celecoxib (Celebrex), naproxen (Aleve, Naprosyn), meloxicam (Mobic), and diclofenac (Voltaren, Cataflam). In addition, antacids and other supplements that contain aluminum, calcium, and magnesium can interfere with how your body absorbs bisphosphonates, so you should not take these medicines for at least 30 minutes after taking your bisphosphonate tablet.