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. |
