I am a 34 1/2(not even close to 35, lol) year old with SLE, diagnosed 17 years. I am TOTALLY bald, and I mean everywhere. I have had alopecia totalis for at least 3 years, prior to that I had spots here and there. I am curious to see if anyone else out there has this symptom.
Alopecia is a rather common manifestation of Systemic Lupus occuring in about 32-54% of SLE patients. Alopecia totalis is a rare manifestation.
ALso, there is a condition known as alopecia areata. Alopecia areata is considered an autoimmune disease, in which the immune system, which is designed to protect the body from foreign invaders such as viruses and bacteria, mistakenly attacks the hair follicles, the tiny cup-shaped structures from which hairs grow. This can lead to hair loss on the scalp and elsewhere on the body. In most cases, hair falls out in small, round patches about the size of a quarter. In many cases, the disease does not extend beyond a few bare patches.
However, in some people, hair loss is more extensive. Although uncommon, the disease can progress to cause total loss of hair on the head (referred to as alopecia areata totalis) or complete loss of hair on the head, face, and body (alopecia areata universalis).
In alopecia areata, immune system cells called white blood cells attack the rapidly growing cells in the hair follicles that make the hair. The affected hair follicles become small and drastically slow down hair production. Fortunately, the stem cells that continually supply the follicle with new cells do not seem to be targeted. So the follicle always has the potential to regrow hair.
Scientists do not know exactly why the hair follicles undergo these changes, but they suspect that a combination of genes may predispose some people to the disease (as a combination of genes may predispose some people to have SLE). In those who are genetically predisposed, some type of trigger--perhaps a virus or underlying illnes, like Lupus, brings on the attack against the hair follicles.
There is every chance that your hair will regrow, but it may also fall out again. No one can predict when it might regrow or fall out. The course of the disease varies from person to person. Some people lose just a few patches of hair, then the hair regrows, and the condition never recurs. Other people continue to lose and regrow hair for many years. A few lose all the hair on their head; some lose all the hair on their head, face, and body. Even in those who lose all their hair, the possibility for full regrowth remains. In some, the initial hair regrowth is white, with a gradual return of the original hair color. In some, the regrown hair is different in texture and color. However, in most, the regrown hair is ultimately the same color and texture as the original hair.
While there is neither a cure for alopecia areata nor drugs approved for its treatment, some people find that medications approved for other purposes can help hair grow back, at least temporarily. The following are some treatments for alopecia areata. Keep in mind that while these treatments may promote hair growth, none of them prevent new patches or actually cure the underlying disease. Consult your health care professional about the best option for you.
* Corticosteroids--Corticosteroids are powerful anti-inflammatory drugs similar to a hormone called cortisol produced in the body. Because these drugs suppress the immune system if given orally, they are often used in the treatment of various autoimmune diseases, including alopecia areata. Corticosteroids may be administered in three ways for alopecia areata:
* Local injections--Injections of steroids directly into hairless patches on the scalp and sometimes the brow and beard areas are effective in increasing hair growth in most people. It usually takes about 4 weeks for new hair growth to become visible. Injections deliver small amounts of cortisone to affected areas, avoiding the more serious side effects encountered with long-term oral use. The main side effects of injections are transient pain, mild swelling, and sometimes changes in pigmentation, as well as small indentations in the skin that go away when injections are stopped. Because injections can be painful, they may not be the preferred treatment for children. After 1 or 2 months, new hair growth usually becomes visible, and the injections usually have to be repeated monthly. The cortisone removes the confused immune cells and allows the hair to grow. Large areas cannot be treated, however, because the discomfort and the amount of medicine become too great and can result in side effects similar to those of the oral regimen.
* Oral corticosteroids--Corticosteroids taken by mouth are a mainstay of treatment for many autoimmune diseases and may be used in more extensive alopecia areata. But because of the risk of side effects of oral corticosteroids, such as hypertension and cataracts, they are used only occasionally for alopecia areata and for shorter periods of time.
* Topical ointments--Ointments or creams containing steroids rubbed directly onto the affected area are less traumatic than injections and, therefore, are sometimes preferred for children. However, corticosteroid ointments and creams alone are less effective than injections; they work best when combined with other topical treatments, such as minoxidil or anthralin.
* Minoxidil (5%) (Rogaine*)--Topical minoxidil solution promotes hair growth in several conditions in which the hair follicle is small and not growing to its full potential. Minoxidil is FDA-approved for treating male and female pattern hair loss. It may also be useful in promoting hair growth in alopecia areata. The solution, applied twice daily, has been shown to promote hair growth in both adults and children, and may be used on the scalp, brow, and beard areas. With regular and proper use of the solution, new hair growth appears in about 12 weeks.
*Brand names included in this booklet are provided as examples only, and their inclusion does not mean that these products are endorsed by the National Institutes of Health or any other Government agency. Also, if a particular brand name is not mentioned, this does not mean or imply that the product is unsatisfactory.
* Anthralin (Psoriatec)--Anthralin, a synthetic tar-like substance that alters immune function in the affected skin, is an approved treatment for psoriasis. Anthralin is also commonly used to treat alopecia areata. Anthralin is applied for 20 to 60 minutes ("short contact therapy") to avoid skin irritation, which is not needed for the drug to work. When it works, new hair growth is usually evident in 8 to 12 weeks. Anthralin is often used in combination with other treatments, such as corticosteroid injections or minoxidil, for improved results.
* Sulfasalazine--A sulfa drug, sulfasalazine has been used as a treatment for different autoimmune disorders, including psoriasis. It acts on the immune system and has been used to some effect in patients with severe alopecia areata.
* Topical sensitizers--Topical sensitizers are medications that, when applied to the scalp, provoke an allergic reaction that leads to itching, scaling, and eventually hair growth. If the medication works, new hair growth is usually established in 3 to 12 months. Two topical sensitizers are used in alopecia areata: squaric acid dibutyl ester (SADBE) and diphenylcyclopropenone (DPCP). Their safety and consistency of formula are currently under review.
* Oral cyclosporine--Originally developed to keep people's immune systems from rejecting transplanted organs, oral cyclosporine is sometimes used to suppress the immune system response in psoriasis and other immune-mediated skin conditions. But suppressing the immune system can also cause problems, including an increased risk of serious infection and possibly skin cancer. Although oral cyclosporine may regrow hair in alopecia areata, it does not turn the disease off. Most doctors feel the dangers of the drug outweigh its benefits for alopecia areata.
* Photochemotherapy--In photochemotherapy, a treatment used most commonly for psoriasis, a person is given a light-sensitive drug called a psoralen either orally or topically and then exposed to an ultraviolet light source. This combined treatment is called PUVA. In clinical trials, approximately 55 percent of people achieve cosmetically acceptable hair growth using photochemotherapy. However, the relapse rate is high, and patients must go to a treatment center where the equipment is available at least two to three times per week. Furthermore, the treatment carries the risk of developing skin cancer.
In addition to treatments to help hair grow, there are measures that can be taken to minimize the physical dangers or discomforts of lost hair.
* Sunscreens are important for the scalp, face, and all exposed areas.
* Eyeglasses (or sunglasses) protect the eyes from excessive sun, and from dust and debris, when eyebrows or eyelashes are missing.
* Wigs, caps, or scarves protect the scalp from the sun and keep the head warm.
* Antibiotic ointment applied inside the nostrils helps to protect against organisms invading the nose when nostril hair is missing.
* Alternative therapies--When drug treatments fail to bring sufficient hair regrowth, some people turn to alternative therapies. Alternatives purported to help alopecia areata include acupuncture, aroma therapy, evening primrose oil, zinc and vitamin supplements, and Chinese herbs. Because many alternative therapies are not backed by clinical trials, they may or may not be effective for regrowing hair. In fact, some may actually make hair loss worse. Furthermore, just because these therapies are natural does not mean that they are safe. As with any therapy, it is best to discuss these treatments with your doctor before you try them.
I Hope I Have Been Helpful.....
Peace and Blessings