Your Frequently Asked Questions
(originally published in "Scleroderma Voice," 2006 #2)
The Scleroderma Foundation receives questions on a daily basis from patients seeking answers to various health issues. Although scleroderma is a highly individualized disease, we have found that some concerns are very common among those affected. We thought this forum would be a perfect opportunity to revisit some of these concerns and address them in detail.
We hope you find this section informative. However, we understand that individual circumstances are unique and ask that you seek the guidance of your healthcare professional to obtain the treatment plan best suited to your specific health history.
How can I find a physician who is
knowledgeable about scleroderma?
Rheumatologists and some dermatologists are usually the specialists most familiar with scleroderma. Patients with localized forms of scleroderma like morphea and linear scleroderma may benefit from care by a dermatologist specializing in medical dermatology. However, as scleroderma is a rare disease, some physicians will never have come across it in their practice, and may not be aware of current recommendations for diagnostic testing and treatment options. Seeing a scleroderma specialist is important in receiving up-to-date, proactive care. There are several ways to obtain the names of specialists.
The Scleroderma Foundation’s Medical Advisory Board has reviewed 19 scleroderma centers of excellence throughout the U.S. They are listed as Research/Treatment Centers under the Education and Resources section on our website. You may call the Foundation for their phone numbers if you do not have internet access. Some patients choose to travel to one of these centers for an evaluation and periodic follow-ups while coordinating continuing care with their local doctor.
Another source of scleroderma specialists can be found in the member centers of SCTC, the Scleroderma Clinical Trials Consortium. This not-for-profit organization is dedicated to finding ways to treat scleroderma. Member institutions conduct clinical trials of medications and some doctors associated with the institutions may also see patients. SCTC currently has members in 23 states, as well as international members. Their website is www.sctc-online.org. They may also be reached at 617-638-4486.
A third way to find a rheumatologist who may be familiar with scleroderma is to check the American College of Rheumatology (ACR), member listings by city. This listing does not guarantee the member physician’s knowledge of scleroderma, but provides you with a list of rheumatologists in a specific city. You may then wish to screen the names by calling individual doctor’s offices to ask if there are any scleroderma patients in the practice, what type of scleroderma is treated, and what treatment methods are offered. The ACR website is www.rheumatology.org/directory/geo.asp and their phone number is 404-633-3777.
Your local support group or chapter is also willing to provide the names of physicians their members see.
For international scleroderma specialists, SCTC, ACR and EULAR (European League Against Rheumatism) and EUSTAR, (Eular Scleroderma Trials and Research) list their member institutions. EUSTAR’s web address is www.eustar.org. The EUSTAR secretariat may be reached in Italy at +39-055-7949271.
Is there a lotion or cream that
will help with my skin tightness?
This question is more complicated than it appears. Scleroderma affects the sweat glands and thus makes the skin extremely dry. Moisturizers and creams can help the skin feel less dry and tight, and using them may help keep ulcers from forming, but they can not help the underlying problem that is causing the skin tightness.
Skin tightness, or fibrosis, occurs because the immune system is causing an overproduction of collagen, which makes the skin hard. Over time, the skin may soften on its own, so the most important treatment during the early phase is aggressive physical therapy to maintain as much mobility as possible. Immunosuppressant medications may also help.
Various treatments (none proven in clinical trials) that have been used for systemic scleroderma skin fibrosis include:
- D-penicillamine
- Methotrexate
- Cyclophosphamide
- Cyclosporine
- Mycophenolate mofetil
For localized scleroderma, antimalarials like hydroxychloroquine sulfate may be used. Other options may include:
- Methotrexate
- Prednisone
- Phenytoin
- Potassium p-aminobenzoate
- D-penicillamine
- PUVA (phototherapy)
Self care to help with tightness includes keeping skin moisturized, wearing gloves to protect hands, using humidifiers and most importantly doing aggressive physical therapy to maintain mobility. Ask your doctor to prescribe a physical and/or occupational therapy program for you. Some people also find massage helpful.