Scleroderma

Scleroderma (SSc) is Greek for hard (sclero ) skin (derma). SSc can involve small areas of skin (Morphea) or in the systematic or diffuse form: the heart, lungs, kidneys, esophagus, blood vessels and digestive tract. Compared to other rheumatic diseases, its incidence is less common, striking women more often than men or children.  Affecting approximately 400,000 Americans, it usually occurs between the ages of 30 and 50, with only 10% developing the disease before the age of 20.

SYMPTOMS

Early diagnosis may be difficult as each case presents different symptoms and follows a different progression. Some symptoms are:

Fatigue, weakness, dizziness

Tight, stiff, hard skin areas

Hair loss

Weight loss

Achy, stiff joints, decreased range of motion

Tingling, pins and needles in fingers and toes

Esophageal dysfunction swallowing problems, heartburn, nausea

Diarrhea, constipation

Shortness of breath, decreased lung capacity

Kidney, liver dysfunction

Raynaud's Phenomenon - discoloration (blue, red, white), pain, numbness in extremities

Ulcerations of skin, usually fingers or knuckles, but can also be on feet, toes, ears, or elbows

Telangiectasia - small red spots (dilated blood vessels) on face, tongue, lips, hands, arms

Sclerodactyl - curling of fingers and toes

Calcinosis - calcium deposits in skin: starts as a small, hard lumps, becoming increasingly painful as it works its way to the surface and out; easily infected

VARIATIONS OF SCLERODERMA

Mophea (localized or generalized)

Oval patches of inflamed, discolored skin that hardened over time. May be limited to one spot or may involve several areas. Usually limited to skin involvement with no blood vessel or organ involvement; rarely becomes systemic.

Linear Scleroderma

More common in children. Usually expressed as bands of tight skin associated with tissue loss and altered bone development. Disfiguring, but not life-threatening.

Limited Scleroderma CREST

A systematic version, but not considered as serious as the diffuse or systematic version. The letters for CREST stand for Calcinosis, Raynaud's phenomenon, Esophageal dysfunction, Sclerodactyl, Telangiectasia, the primary symptom of this form. This is a usually more benign form with a lower incident of lung or kidney involvement. As in the systemic form, the extent of skin involvement is an indicator or disease severity.

Diffuse or Systemic Scleroderma (SSc)

Most serious form often with eventual organ involvement; disfiguring, and potential to be fatal. Usually progresses through three phases:

Phase one: edematous phase with stiff, puffy fingers and hands

Phase two: induration, hardness of skin, sclerodactly and classic expresionless, mask- like face

Phase three: atrophic phase when the skin may eventually soften

Patients with skin involvement on the trunk at diagnosis are more likely to develop a more severe form of the disease than those with skin involvement limited to the arms, legs and face. Some patients may have a long history of Raynaud's before developing SSc. Lung, heart, kidneys, intestinal tract and esophagus can become involved.

ANTIBIOTIC THERAPY

Developed and used successfully for over 50 years by rheumatologist Thomas McPherson Brown, MD, antibiotic therapy has been shown to significantly decrease disease activity. It is based on his belief that SSc is an acquired disease; environmental factors may contribute.

Treatment with tetracycline antibiotics have proven to be generally safe over many years of use. Oral drugs in the tetracycline family is most frequently used.  A gradually improvement is often noticed as symptoms slowly reverse. Proof of the effectiveness of antibiotics can be seen by greatly improved laboratory numbers as the antibiotics begin to work. In a great many cases, patients are able to return to normal activity with little or no permanent damage if treatment is begun early enough.

Although it is unusual for scleroderma patients to improve when on traditional therapies, in some cases, a remission may occur. In these cases, the patient does not get worse, but seldom improves. Spontaneous remissions are rare; but with antibiotic therapy, reversals and remissions are not uncommon.

The Minocycline in Early Diffuse Scleroderma Study published in the November 28, 1998, issue of The Lancet validated minocycline as an effective treatment for scleroderma.

THOMAS MCPHERSON BROWN, MD

Dr. Brown was the founder and chairman of the Arthritis Institute. He was a world renowned leader in arthritis research and treatment.

A Phi Beta Kappa graduate of Swarthmore College and Johns Hopkins Medical School, he served as Chief resident in Medicine at Johns Hopkins.

Dr. Brown served as an assistant professor of medicine at John Hopkins School of Medicine and Director of Arthritis Research at the Veterans Administration Hospital in Washington, DC and as professor of medicine and department chairman at George Washington School of Medicine in Washington, DC

Dr. Brown was one of the founders of the American College of Rheumatology and was also a Trustee for the Arthritis Foundation.

In 1970, he left George Washington and founded the Arthritis Institute of the National Hospital for Orthopedics and Rehabilitation, where he continued both treatment and research of RA. During his career he published approximately 100 papers in medical journals detailing his research and his theory as to the mechanism of rheumatic disease.

Dr. Brown died in April 1989, and the Arthritis Institute closed in 1996. Dr. Brown?s work continues through the Road Back Foundation.

THE FUTURE

Research has focused on interrupting the various immune system processes with limited success. Each new era began with hopeful enthusiasm, but most have proven disappointing over the long-term.

The Road Back Foundation's Minocycline in Early Diffuse Scleroderma study (C Le, A Morles, & D.E. Trentham The Lancet 1998) should open the door to future research into the use of antibiotics as a safe and effective treatment for this disease. We hope with improved technology, the triggering organism/cause(s) will finally be identified and a cure found.

Based on 53 years of anecdotal successes and now an official study, it is hoped that research and the considerable dollars involved will begin to channel into an area of investigation that will prove beneficial to the many patients and their friends and families who are devastated by this disease.

THE ROAD BACK FOUNDATION was founded by patients who have seen significant recovery from rheumatic diseases through the use of antibiotic therapy. It is because of these remarkable improvements and the growing body of evidence that we are dedicated to spreading information about this treatment to patients, and encouraging the medical profession to offer antibiotics to their patients with rheumatic diseases.

Although this treatment is met with controversy in some medical circles, an increased volume of published research from around the world is appearing in medical journals which supports the use of antibiotic therapy. The many patient stories on our web site and others which feature antibiotic therapy for rheumatic disease lend further evidence to the effectiveness of the treatment.

INFORMATION SOURCES

The groundbreaking books listed below are important resources for people who want to understand antibiotic therapy used in the context of rheumatic disease. There are other books now published that you might explore to further understand the implications of antibiotic therapy used as a first line treatment option or in conjunction with additional approaches. 

Scleroderma: The Proven Therapy That can Save Your Life by Henry Scammell

The New Arthritis Breakthrough By Henry Scammell with Thomas McPherson Brown

Visit The Road Back Foundation web site at: www.roadback.org

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The Road Back Foundation does not engage in the practice of medicine. Consult with a physician to assess any medical treatment that is being considered. The Road Back Foundation encourages healthcare consumers to thoroughly investigate and understand all treatments and medications before proceeding. This material is for educational purposes only

The Road Back Foundation
P.O. Box 410184
Cambridge, MA 02141
614-227-1556
www.roadback.org