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.