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Patient Resources

American College of Rheumatology

The American College of Rheumatology (ACR) is an organization of and for physicians, health professionals, and scientists that advances rheumatology through programs of education, research, advocacy and practice support that foster excellence in the care of people with arthritis and rheumatic and musculoskeletal diseases.

Lupus Foundation of America

With nearly 300 chapters, branches, and support groups in 32 states, the Lupus Foundation of America (LFA) is the nation’s leading non-profit voluntary health organization dedicated to finding the causes and cure for lupus.  Their mission is to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure.  There are chapters in Kansas City and St. Louis.

National Institute of Health – Arthritis

The National Institute of Health (NIH) is a worldwide leader in research of rare disorders. The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases.

National Osteoporosis Foundation

Established in 1984, the National Osteoporosis Foundation (NOF) is the nation’s leading voluntary health organization solely dedicated to osteoporosis and bone health.

We encourage patients to become educated on routine vaccinations, as they help prevent communicable diseases, and may help protect our immunosuppressed patients from several common diseases. Click Here for the updated CDC website vaccination recommendation schedules.

The Arthritis Foundation

The Arthritis Foundation offers information and tools to help people live a better life with arthritis.  They sponsor chapters throughout America which host local informative gatherings and events.

John Hopkins Scleroderma Center

Scleroderma is a rheumatic autoimmune disease that causes hardening of the skin and other tissues of the body. Early symptoms include Raynaud’s phenomenon. Although Scleroderma is chronic, it can be treated successfully.  John Hopkins is a world-wide leader in Scleroderma research and treatment.

Mayo Clinic Guide – Diseases and Conditions

A comprehensive guide to hundreds of medical conditions.

Clinical Trials.gov

This is a database for current clinical trials that are being done around the world. Many patients are interested in participating in trials. Contact information on participant enrollment and research sites are provided here.

 

Arthritis in our Community

Here are some of Kansas City's top annual events.

Art for Arthritis

The Arthritis Foundation organizes this annual gala and auction to help empower children diagnosed with juvenile arthritis. Check out The Arthritis Foundation - Kansas City chapter - for more information.

Walk for a Cause

There are two main walk/run gatherings every year to participate in, organized by our local Lupus Foundation of America and Arthritis Foundation chapters.

Frequently Asked Questions

Here are some common questions for your benefit.  Please ask your physician any additional questions for a more individualized answer.

Do you have any information on COVID vaccines and immunosuppression?

Currently, we are not aware of any compelling reason for our patients to avoid these vaccines. We always weigh potential risks and benefits of any therapy and in this case, we think vaccination to protect against getting COVID-19 is paramount.  Most of our medications can be continued without pause while obtaining any vaccination.

If you take the following medications, and your rheumatologic disease is doing well, please HOLD your medication for 1 week after each dose of COVID-19 vaccine:

Methotrexate, Xeljanz, Rinvoq, Olumiant

If you are taking any of the following medications, please contact your Rheumatologist to discussing the timing of your vaccination:

Rituximab, Cyclophosphamide (Intravenous), Orencia

VACCINE BOOSTER INFORMATION:

The FDA has expanded the Pfizer, Johnson & Johnson, and Moderna COVID-19 vaccine for the purpose of boosting many of the immunosuppressed patients with autoimmune diseases, and furthermore has expanded this booster recommendation to the general public.

A decision on to get a 4th or 5th booster shot is an individualized decision. Please speak with your physician.

If you are on ANY of the following medications listed below, we highly encourage you to get a booster dose.

Pills/capsules:

Prednisone (20 mg/daily or greater), Methotrexate, Azathioprine

Leflunomide, Mycophenolate (Cellcept), Tofacitinib (Xeljanz), Baricitinib (Olumiant), Upadacitinib (Rinvoq), Cyclophosphamide

Injectables/IV drugs:

Etanercept, Adalimumab, Infliximab, Certolizumab, Golimumab, Tocilizumab, Secukinumab, Ixekizumab, Cyclophosphamide, Abatacept, Rituximab, Belimumab

To find a location to receive your booster, please visit Vaccines.gov or call 1-800-232-0233.  There is no need to get antibody test to see if you mounted immunity from your initial round of vaccination. 

What is Rheumatology?

Rheumatology derives from “rheumatism”, a now colloquial term which refers to disorders of connective tissue, especially muscles, joints, and associated structures. Rheumatologists diagnose and treat a variety of musculoskeletal conditions, such as osteoarthritis and tendonitis; and most autoimmune disorders, including lupus and rheumatoid arthritis.

Is there anything I can do to improve my health besides medications?

Always!  Without a doubt, rigorous trials suggest leading a healthy lifestyle improves our bodies resiliency and ability to cope with musculoskeletal issues, as well as directly limiting inflammation.  This includes avoiding excessive sugary products, staying active with exercise and movement strategies, and avoiding tobacco products.  They really do make a huge difference!

My medications are too expensive. Can you help?

Sometimes!  If your medication has a generic option (many do), then lower prices often can be found through Costplusdrugs, GoodRx, or Affordabledrugs.  If your condition requires more expensive brand name medications, then patient assistance programs or manufacturer co-pay card may work for you. We will help you figure out the right choice for you.

I am a new patient. What should I expect?

Our visits include a comprehensive history and physical examination to help guide your care.  We ask that all new patients arrive 30-45 minutes early.  Please bring a copy of your insurance card.

Are there further links to detailed questions regarding my condition?

YES!  The American College of Rheumatology (ACR) has tons of useful information.  Check out their Patient Resource page here.