Your Frequently
Asked Questions
(originally
published in "Scleroderma Voice," 2005 #2)
Can persons diagnosed with systemic
scleroderma donate blood?
According to the American Red Cross of the New England
Region, the FDA revised its policy in the spring of
2005 to allow persons diagnosed with scleroderma to
give blood. However, each donor center is allowed latitude
in making its policies more stringent if it so desires.
For this reason, you may find that some donor centers
will accept donations and others will not. Please keep
in mind, however, that other factors such as complications
of your diagnosis or certain medications will be taken
into consideration and may exclude as a donor. For more
information, please contact your local Red Cross office.
Should persons diagnosed with scleroderma
receive flu shots?
Any person diagnosed with systemic scleroderma should
have a conversation with their rheumatologist or primary
care physician regarding the flu shot. The general rule
of thumb for this patient population is that yes, you
should have an annual flu shot. This is especially true
if you have any lung involvement or are on immunosuppressant
medications (medications that dampen the immune system).
Examples of immunosuppressant medications include methotrexate,
corticosteroids, cytoxan, and imuran, among others.
The risk to patients with any chronic systemic disease
is that by contracting the flu, a secondary bacterial
infection or pneumonia may develop. The vaccine could
help to prevent such an occurrence.
A note of caution: if you are allergic to eggs
you should not receive this vaccine as the virus used
to create the vaccine is grown in eggs.
Patients should also consider receiving the Pneumovax
vaccine to prevent pneumonia. This vaccine should be
administered once every five years.
Are there any ways to improve scleroderma
symptoms by adopting a particular diet?
At this time, there is no scientific data available
to support any particular diet over another for the
treatment of scleroderma symptoms. Physicians recommend
that persons with a diagnosis of scleroderma observe
a healthy balanced diet following the ADA guidelines.
Removing any one particular food group such as dairy
or grains has not been shown to have an effect on disease
progression.
That being said, however, there are times that persons
with scleroderma may need to observe special diets.
This situation occurs when certain complications develop.
If one has gastrointestinal involvement including gastroesophageal
reflux disease (GERD), difficulty swallowing, bloating,
decreased motility, and weight loss, removal of certain
foods or types of foods from the diet are often necessary
to minimize symptoms and improve health.
A consultation with a dietician may be very helpful
in these cases to ensure that all necessary daily dietary
requirements are being met and that the patients’
diet is not too restrictive or undesirable. So often
when a special diet is recommended food may no longer
seem as desirable and preparation of these foods certainly
are not conventional. A dietician can help patients
prepare foods that are palatable and offer suggestions
for variety so that the diet does not become too routine.
Examples of special dietary considerations for the
aforementioned complications would include soft, or
pureed food, high calorie foods, removal of foods that
aggravate GERD, or low residue diets to minimize severe
constipation and bloating.
Another example of a special diet may be for those
that have pulmonary hypertension or kidney disease.
These patients may be on very strict salt restricted
diets. If you have any questions regarding diet please
have a discussion with your physician prior to starting
on any restrictions. Not only will your specific complications
dictate the type of diet that you should observe, but
your individual medication regimen may also require
addition or deletion of particular foods from your daily
meals.
Again, guidance should be sought to ensure that daily
dietary requirements are being met and that symptoms
are being controlled.
I have lost the padding on the bottom of my feet.
How can I minimize the pain associated with this?
A visit to a podiatrist may prove to be helpful. A
podiatrist can make molds of your feet and provide orthotics
that slip into your shoes to provide support and cushioning.
Some people may benefit from diabetic shoes, which have
a wider toebox and additional cushioning. These shoes
allow for orthotic insertion and are designed to provide
proper gait and balance. They also lack seams which
can tend to rub toes and cause blisters. This is not
only a concern for those that are diabetic, but also
for those that have Raynaud’s that affects their
feet. This type of shoe can be found on line at www.heliohealth.com,
www.healthyfeetstore.com. You may also want to visit
your local medical supply store as they will be able
to assist you with correct sizing.
Several people have recommended a specialty shoe called
theZ-Coil, which has a large spring at the heel to provide
cushioning, and built-in orthotics. You can visit them
online at www.zcoil.com to find a store near you or
call the Foundation toll-free at 800•722•4673
for assistance.
A consultation with a podiatrist can help to determine
whether you could benefit from a specialty shoe and
if so, help to identify the best type for your needs.
Help! My hair is thinning. Is hair loss
associated with scleroderma?
At this time, not much has been written about hair
loss specific to scleroderma. However, since there are
many reasons for hair loss, we will review a few in
an effort to bring some understanding to this question.
Medications may cause loss of hair. Some medications
commonly used in the treatment of scleroderma could
possibly be the culprit in your hair loss. Cyclophosphomide,
methotrexate, corticosteroids, hydroxychloroquine, calcium
channel blockers and antidepressants are a few medications
that can cause hair loss in some people.
Hormone imbalances such as over or underactive thyroid
can cause hair loss. Psychological stress, severe chronic
illness, or a severe infection are a few of the causes
of a condition known as telogen effluvium. Telogen effluvium
seems to come on suddenly and patients will notice a
diffuse thinning of the hair on their scalps. Patients
often notice that they are losing “handsful”
of hair while shampooing or combing their hair. This
hair loss actually occurs several weeks to several months
after the precipitating stressor.
Keep in mind that it is normal to shed up to about
100 hairs a day on one’s comb, brush, in the sink
or on the pillow. This is the result of the normal hair
growth cycle. Hairs will grow for a few years, then
rest for a few months, shed, and regrow. Telogen is
the name for the resting stage of the hair growth cycle.
A telogen effluvium is when some stress causes hair
roots to be pushed prematurely into the resting state.
The most important issue in telogen effluvium is to
determine if an underlying cause for the problem is
present. Blood tests may need to be done if the cause
is not obvious, such as mild iron deficiency. If the
telogen effluvium is caused by a medication, the medication
needs to be stopped. When the cause of the hair loss
is something like giving birth, a transient illness,
or other self-limited problem the induced telogen effluvium
is also usually self-limited and requires no treatment.
Medscape reports the following regarding hair loss
and scleroderma. Scarring alopecias cause permanent
hair loss and have in common the destruction of the
hair follicles. Lesions show the loss of follicle orifices.
So far, a broadly accepted classification system of
sarring alopecias does not exist. The list of scarring
alopecias is vast because many diseases of the skin
involve the bulb of the follicles and may cause permanent
damage to hair follicles. These are secondary scarring
alopecias: for example, systemic scleroderma or linear
scleroderma en coup de sabre, dermatomyositis, sarcoidosis,
and pemphigoid.
To try to determine the reason for your hair loss,
your physician will look at the areas and pattern of
loss, the bulb of your hair, take a history and perform
a physical exam.
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