Scalp Frontal Fibrosing Alopecia (FFA)

FFA: Scaling Around Hairs

Frontal fibrosing alopecia (FFA) is a type of scarring hair loss that occurs more often in women than men. It causes hair loss along the frontal hairline as well as several other areas including the sides and back of scalp, eyebrows, eyelashes, and body hair.

This picture shows a very typical appearance of the frontal scalp in FFA. There are numerous single hairs, many with scale around those hairs (called perifollicular scaling). A few broken hairs are seen and one hair in the picture is markedly twisted (a phenomenon known as "pili torti"). This is mild scalp redness.

Many treatments are available as we have reviewed together previously. This patient was started on a 5 alpha reductase inhibitor (finasteride, 5 mg) along with pimecrolimus cream (Elidel) and steroid injections. Clobetasol proprionate shampoo (Clobex) will be used weekly and reassessment will be done in 4-6 months.
 

Early Discoid lupus erythematosus

DLE (Discoid Lupus)

Discoid lupus erythematosus (or simply “DLE”) is a scarring hair loss condition. DLE has a unique feature that is important to know about: the early and aggressive treatment of hair loss in patients with DLE can often lead to some degree of hair regrowth. (This remarkably potential for regrowth can also be seen in some patients with two other scarring alopecias: frontal fibrosing alopecia and dissecting cellulitis).

This picture shows some of the classic features of early DLE. There is some redness admixed with a dirty brown pigmentation. Some white scale is seen. The arrows are pointing to one of the more important trichoscopic features: plugged hair follicles (also called “follicular plugging”). A large number of single hairs are seen indicated of its destructive potential.

Scaling around hair follicles

Perifollicular Scale

The appearance of white colored scale around hair follicles is common. This can either be concerning - or not concerning. The white scale in the right picture is not concerning and represents a mild scale from normal epidermal turnover. The patient also has androgenetic alopecia. There is only one follicle affected and the scale is not tightly adherent to the hair follicle. When I see this, it catches my attention for just a second and then I move on to assess other scalp features.

The picture on the left shows a pattern of scale which is concerning. When I see hair follicles that look like this I am immediately concerned. This scale is tightly adherent to the follicle and forms a circular shape all around the follicle. It is important to note the underlying redness and it is also important to note that all of the follicles in the photo are just single hairs. Scale that tightly encircles the hair follicle in this manner is known as "perifollicular scale." In this left sided picture, the patient has an underlying scarring alopecia known as lichen planopilaris. Perifollicular scale and perifollicular redness are common in lichen planopilaris (as well as frontal fibrosing alopecia). Scale patterns can change if a patient washes his or her hair within 12 hours of their appointment. Sometimes, in order to better appreciate scaling in patients with challenging diagnoses - I will ask them to refrain from washing the scalp for 24-72 hours. I don't commonly do this but it can be helpful.

Scarring Alopecias

Loss of Follicular Openings in Scarring Alopecia

There are many different forms of hair loss. We broadly classify hair loss into the "scarring" forms and the "non-scarring" forms. Patients with scarring forms (also called scarring alopecia) may experience hair loss accompanied by symptoms such as itching, burning or even scalp tenderness/bruising. Some patients, however are completely asymptomatic.

The hallmark of all scarring alopecias is the loss of the follicular openings or "pores" when examined up close. Rather these areas are replaced by scar tissue - as shown here in this photo of a patient with a scarring alopecia known as lichen planopilaris (LPP).

Seborrheic Dermatitis and Scarring: Seborrheic Folliculitis

Can a seborrheic dermatitis lead to a scarring alopecia-like phenomenon?

In 2015, Australian researchers reported an interesting article in the Australasian Journal of Dermatology suggesting the possibility of a low grade folliculitis which ultimately leads to development of a scarring alopecia.

The study described 56 patients (35 female and 21 male, age range late teens to late 70s) with a seborrheic dermatitis like presentation that was associated with a scarring alopecia. They termed the condition “seborrheic folliculitis.” These patients presented clinically with a red, itchy scalp (some patients) along with a diffuse or patchy dandruff like presentation. Shedding of telogen hairs was a feature.

Perifollicular parakeratotic scale was noted along with variable scalp erythema, and perifollicular prominence. Dermoscopy showed perifollicular hyperkeratosis and increased vascularity in the perifollicular areas. Pathology showed an absence of lichenoid change and there was a mild interfollicular fibrosis much like is seen in folliculitis decalvans (although too mild for typical folliculitis decalvans).  Spongiosis of the follicular epitheilium was noted along with a perivascular and perifollicular infiltrate of lymphocytes. Treatment was successful in many patients with tar shampoos and doxycycline. 

Here is one such example of a "seborrheic folliculitis" in a patient with androgenetic alopecia. Scarring is present and focal areas devoid of hair can be found on the scalp.

Reference

Pitney L et al. Is seborrhoeic dermatitis associated with a diffuse, low-grade folliculitis and progressive cicatricial alopecia? Australas J Dermatol 2016; 57(3):e105-7.

LPP: a type of scarring alopecia.

Lichen planopilaris (LPP)

LPP is a type of scarring hair loss condition.

The cause is unknown although several treatments are possible to try to stop the condition from progressively destroying hair follicles.

Lichen planopilaris of the beard area

LPP of the Beard

Lichen planopilaris (LPP) can affect any area of the body that has hair. When it affects the scalp, it's often red, itchy and scaly/flaky.

When LPP affects the legs, arms facial hair, eyebrows and eyelashes, it's often completely asymptomatic and the patient simply notices hair has disappeared.  Occasionally, a bit of redness is seen in the area too as seen in this photo of the beard area in a man with lichen planopilaris of the facial hair.

Broken hairs in scarring alopecia

"Broken" hairs have blunted, straight or jagged ends. In contrast to newly growing hair, they are not pointed.

This particular photo shows a broken hair in a patient with lichen planopilaris.

Scalp biopsies for hair loss: Is it always needed?

Is a scalp biopsy always needed to determine the cause of an individual's hair loss?

The answer of course is no. A biopsy is only needed if the diagnosis is uncertain. 
In tough hair loss cases, I often like my patients to go a few days without shampooing the scalp. This allows the highest chance of some of the key features of the "suspected" condition to be present on the scalp (and not washed away by a recent shampooing).

Where does one biopsy?

I always biopsy an area which has the most features of the particular hair loss condition I suspect. For scarring alopecias, I often try to biopsy areas that cause the patient's scalp to be itchy, have burning or areas that cause pain.

What causes a red, itchy and bleeding scalp?

Redness, Itching and Bleeding

There are quite a few causes of a red, itchy and bleeding scalp. Anyone with such a trio best see a dermatologist to guide them.

 

Common conditions

Conditions such as psoriasis and seborrheic dermatitis are common in the population and must be placed at the top of the list of possibilities. Other causes include folliculitis decalvans and other scarring alopecias, infections, bites, infestations, allergy and irritation. 

Pinpoint bleeding in this photo tells me right away that the patient I am examining may be quite itchy. As it turned out, they were! 

I often prescribe a topical steroid to help reduce itching.

Lichen planopilaris - a type of scarring hair loss condition

Lichen planopilaris (LPP) is a type of scarring hair loss condition. The cause is unknown although several treatments are possible to try to stop the condition from progressively destroying hair follicles.

Hair transplantation for central centrifugal cicatricial alopecia (CCCA)

Scarring Hair Loss Conditions in Black Women : Is hair transplantation an option?

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**CLICK TO ENLARGE ** Photo of top of scalp in woman with CCCA

Diagnosing hair loss in women with afro-textured hair requires special expertise. Many hair loss conditions are possible and they tend to look similar. Central centrifugal cicatricial alopecia (CCCA) can look similar to genetic hair loss and so can some types of traction alopecia. Our program for women with afro-textured hair addresses some of the unique aspects of hair loss and hair care in black women. 

Hair transplantation in CCCA

Central centrifugal cicatricial alopecia (or "CCCA" for short) is a type of scarring hair loss condition in black women. Hair loss starts in the centre of the scalp and spreads outwards over time. If treated early, the condition may be halted - at least for some women. Hair transplants are possible in CCCA once the condition becomes “quiet.” By quiet, we mean that there has been no further hair loss for a period of 1-2 years. 

Are hair transplants possible for CCCA?

Surgery is sometimes an option for a group of conditions known as scarring alopecias. These conditions are frequently autoimmune in nature and have names like lichen planopilaris, frontal fibrosing alopecia, central centrifugal cicatricial alopecia. 

When can a hair transplant be done in CCCA ?

A hair transplant is not possible for many patients with these conditions because the condition is "active." However, once the condition becomes "quiet" - a hair transplant can be considered. 

By 'quiet', several conditions must be met. These are summarized in the CCCA Hair Transplant Criteria.

DONOVAN CCCA HAIR TRANSPLANT CANDIDACY CRITERIA 

In order for patients with CCCA to be a candidate for hair transplant surgery ,  ALL FIVE of the following criteria must be met:

1.  The PATIENT should be off medications.

Ideally the patient should be off all topical,  oral and injection medications to truly know that the disease is "burned out (burnt out)". However, in some cases, it may be possible to perform a transplant in someone with CCCA who is using medications AND who meets criteria 2, 3 and 4 below.  This should only be done on a case by case basis and in rare circumstances. It is a last resort in a very well-informed patient. 

2. The PATIENT must not report symptoms related to the CCCA in the past 12 months, (and ideally 24 months) .

The patient must have no significant itching, burning or pain. One must always keep in mind that the absence of symptoms does NOT prove the disease is quiet but the presence of symptoms certainly raises suspicion the disease could be active.  Even the periodic development of itching or burning from time to time could indicate the disease has triggers that cause a flare and that the patient is not a candidate for surgery. The patient who dabs a bit of clobetasol now and then on the scalp to control a bit of itching may also have disease that is not completely quiet. 

3. The PHYSICIAN must make note of no clinical evidence of active CCCA in the past 12 months, (and ideally 24 months).

There must be no scalp clinical evidence of active CCCA such as hair fragility or scalp erythema. . This assessment is best done with a patient who has not washed his or her hair for 48 hours. Some scalp redness may be persistent in patients with scarring alopecia even when the disease is quiet. Therefore scalp redness alone does not necessarily equate to a concerning finding. Perifollicular redness however is more concerning for disease activity.  In addition, the pull test must be completely negative for anagen hairs and less than 4 for telogen hairs.  A positive pull test for anagen hairs indicates an active scarring alopecia regardless of any other criteria.

4. Both the PATIENT and PHYSICIAN must show no evidence of ongoing hair loss over the past 12 months (and ideally 24 months). 

There must be no further hair loss over a period of 24 months of monitoring OFF the previous hair loss treatment medications. This general includes the patient and physician's perception that there has been no further loss as well as serial photographs every 6-12 months showing no changes. 

5. The patient must have sufficient donor hair for the transplant. 

Not all patients with CCCA maintain sufficient donor hair even if the disease has become quiet. But this is an important and final criteria.

 

Hair Transplantation in Scars - Is it Possible?

New hair follicles transplanted into a scar.

Hair Transplantation in Scars

A small number of men and women have scars in the scalp. This can be scars from an previous accident, scars from a previous surgery in the scalp, scars from a previous hair transplant surgery or scars from a scarring hair loss problem. Regardless of the cause of scars, patients visiting the office want to know:

Is it possible to transplant hairs into a scar to improve the appearance of the scar?

In many cases, the answer is "yes" and certainly we've transplanted a wide variety of scarring issues.  But the decision as to whether someone is a good candidate for repairing a scar with a hair transplant depends on a number of factors:

1.  Thickness of the scar. Sometimes scars can be very thick and this compromises the ability of hairs to grow in the scar. A number of techniques can be used to improve a thick scar and make it more receptive to receiving new hair follicles. This includes thinning the scar slightly with steroid injections and debulking the scar by removing bits of the scar before putting in new hair follicles. 

2. Thinness of the scar. As surprising as it sounds, some scars are too thin to be successfully transplanted. The medical term for such thinning is 'atrophy.'  Some scars are too atrophic to receive new hair follicles. When we do decide to proceed and transplant atrophic scars, we use a number of techniques to improve the growth and 'uptake' of transplanted hairs but some severely atrophic scars are challenging to transplant. 

3. Blood supply to the scar. Before a transplant is performed in a scar, I usually test the blood supply. Sometimes a scarring process in the scar can reduce the blood supply to area and in turn reduce the chances of having successful uptake of hair follicles. Certain techniques, such as pre-operative and post-operative use of minoxidil to improve blood flow into a scarred area may be beneficial and is something we often recommend.

In general, our experience has been that transplanting scars can be very successful and patients are really happy to have their scars less noticeable.  It does require experience and a certain degree of art to best camouflage scars with a hair transplants.  We frequently perform smaller sessions (fewer grafts), space the grafts out a bit further and wait longer between sessions if another session is required.  A few other modifications are done during the actual procedures as well. All of these considerations are important and help improve the likelihood that individuals with a scar will achieve outstanding results.

Can I have a hair transplant?

Am I a candidate for a hair transplant?

Many patients who come and meet with me are candidates for hair transplants - but some individuals are not.  For some individuals who aren't good candidates for hair transplants, this information may come as a surprise.

Who can have a transplant and who can not?

Individuals with certain hair loss conditions like genetic hair loss (also called androgenetic alopecia), traction alopecia are good candidates for surgery.  Individuals with other conditions like alopecia areata, scarring alopecia and hair shedding disorders are not candidates for surgery.

Within 1-2 minutes of meeting a patient, I can usually determine if they are good candidates for surgery or not.  

Consider the following patient (pictured on the left) who came to see me with concerns about her increasing hair loss in the centre of the scalp. At close examination and after asking her a series of questions, it became clear that her reason for hair loss was genetic. This made her a good candidate for surgery.

Consider now the woman pictured on the right in the photo. She looks just like the woman on the left. However, a series of questions followed by a detailed examination of her scalp as well as a scalp biopsy allowed me to utlimately diagnose her with lichen planopilaris which is a type of scarring alopecia.  I was not able to perform a hair transplant on this woman as she was was not a candidate for surgery.  Scarring hair loss conditions like lichen planopilaris can not be transplanted when they are in the active phase.    If she had gone for surgery without being properly diagnosed, the transplanted hairs would not have grown well and  perhaps not grown at all.

Not everyone is a candidate for hair transplant surgery. Only with a careful record of questions and a detailed examination of the scalp can all the other reasons for hair loss be excluded.

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Challenging Diagnosis in a Teenager

A recent question, submitted by a visitor to www.donovanmedical.com

I have a teenage daughter who was diagnosed with folliculitus decalvans by one dermatologist and dissecting cellulitus by another. The first time she went bald her hair grew back. This episode is much more severe with a large region that is progressively getting bald. She is very aware of the loss and obviously upset. She is on erythromycin and topical steroid.  Is it worth seeing an immunologist? Previous biopsies show negative results for staph. I don’t know what else to do.

ANSWER FROM DR. DONOVAN

Thanks for the very interesting question.  Because I don’t know much about your daughter’s specific history, and haven’t examined her scalp, I can only make a few general comments. But I hope they are helpful to you!

1. Folliculitis decalvans and dissecting cellulitis are not very common in children and teenagers.

2. Dissecting cellulitis is more common in males, especially Black or Hispanic men.  It can occur in females. It typically causes boggy tender areas on the scalp that sometimes leak pus. Hair loss occurs in these areas and can lead to permanent hair loss. Hair growth occurs if treated early, otherwise leads to permanent hair loss. Patients rarely have bad acne, and cysts under the armpits and in the groin.

KEY QUESTIONS TO CONSIDER FOR DISSECTING CELLULITIS DIAGNOSIS:

Is your daughter experiencing discharge of pus (often with odor) in the areas of hair loss?

Are the areas tender?

Are the areas boggy?

(Individuals with Dissecting Cellulitis often answer yes)

3. Folliculitis decalvans also causes permanent hair loss and begins with itchy bumps often in the crown. Swabs from the scalp may grow bacteria (like the Staphylococcus you mentioned) but not always.

Folliculitis decalvans

KEY QUESTIONS TO CONSIDER FOR FOLLICULITIS DIAGNOSIS :

Does your daughter have itching red bumps in the scalp?

Does she ever wake up with blood on the pillow?

(Individuals with folliculitis decalvans often answer yes)

Why is the diagnosis important?

The diagnosis is important because treatments are different for folliculitis decalvans compared to dissecting cellulitis. For folliculitis decalvans treatment includes medications such as antibiotics, dapsone and retinoids. For dissecting cellulitis, treatments include retinoid medications, possibly antibiotics and sometimes even injectable medications known as TNF inhibitors. 

Other considerations

Episodes of hair loss in teenagers where baldness occurs and then grows back is quite typical of alopecia areata – or specifically a form known as alopecia totalis.  Of course without seeing your daughter, I can't determine the cause of her hair loss- but alopecia areata is one of the few scalp conditions that leads to complete baldness followed by regrowth. Did your daugther experience "complete" scalp baldness for a period of time? Alopecia areata is an autoimmune disease – it’s common in the population and affects about 2 % of the world.  Seeing an immunologist for alopecia areata is not necessary, nor folliculitis decalvans or dissecting cellutlis. 

Dermatologists are among the best trained physicians to address complex hair loss issues.  If you're not sure of what diagnosis your daughter has or question the diagnosis that has been given, be sure to address these issues with the dermatologist. All in all, if the diagnosis remains uncertain, a scalp biopsy might be considered and sent to a specially trained dermatopathologist with expertise in evaluating scalp biopsies.

I hope this information offer help.

- Dr Jeff Donovan

 

Frontal Fibrosing Alopecia: Do we Need a New Name for the Condition?

Frontal Fibrosing Alopecia: Do we Need a New Name

Frontal fibrosing alopecia is an uncommon hair loss condition that usually affects post menopausal women. The cause is not known. 

Frontal Fibrosing Alopecia: What does it mean?

At first glance, the name seems like a good one. Women with frontal fibrosing alopecia lose hair in the front of the scalp and it occurs with scarring (fibrosing process). The women in the photo on the right has typical frontal fibrosing alopecia. 

FRONTAL: Hair from the front of the scalp is lost

FIBROSING: Occurs with scarring (fibrosing process)

ALOPECIA: Simply a medical term for hair loss

Once the hair is lost, it's lost permanently. Only with hair transplant surgery can hair density in the front be improved. But surgery can only be done when the condition is quiet or else the newly transplantedn hairs are likely to die.  An ongoing research study in our office is seeking to understand when it's best to transplant women with frontal fibrosing alopecia.

But is this a good name for the condition?

As time passes, we're learning more and more about frontal fibrosing alopecia. Many women not only lose hair in the front of the scalp (hairline), but also at the sides (above the ears) and at the back as well. The women in the photo shows a typical picture of hair loss occuring at the back. In addition, women with frontal fibrosing alopecia often lose eyebrows (in three quarters of patients) and often lose body hair as well ( in one quarter of patients).

Conclusion

The term frontal fibrosing alopecia has been with us for almost 20 years now. When hair specialists use the term, we know exactly what condition is being referred to. But the term has its limitations - and someday it might take on even a different name - one that encompasses the hair loss from the back and sides of the scalp,  body hair and eyebrows.

Perifollicular Scale in Lichen Planopilaris

Perifollicular Scale in Lichen Planopilaris

Lichen planopilaris is a "scarring hair loss condition" (also called cicatricial alopecia) that affects both men and women. Hair loss can occur anywhere in the scalp. Lichen planopilaris often causes patients to have itching, burning or pain. Patients may also report increased daily hair shedding.

Diagnosis of LPP

The diagnosis of lichen planopilaris can be confirmed with a scalp biopsy - but sometimes it's not absolutely necessary. Patients who come to the the office with hair loss accompanied by itching or burning or pain and have scale encircling their hairs like shown in the two pictures - have a diagnosis of lichen planopilaris without question.

Early detection and treatment of lichen planopilaris is important because the hair loss in this condition is permanent. The sooner treatment can be started the sooner we give patients the chance to stop (or slow down) the rate of their hair loss.

Hair Textural Changes

Hair Texture Changes

Many changes in the hair and scalp may occur as we get older. Some women notice that hair becomes thinner in the front while remaining curlier and thicker in the back. Hair tends to grow slower. Hair greying becomes particularly common.

While hair can sometimes becomes drier, coarser and more kinky as we age, it’s important to have a thorough medical examination by a dermatologist with these particular changes you describe.

Several medical conditions (such as low thyroid hormone levels) and a handful of scalp diseases (including a group of hair conditions known as the scarring alopecia’s) may also lead to coarser and kinkier hair. 

In the photo on the left, you'll see a large area of hair loss in a patient with a hair loss condition known as a "scarring alopecia."  This patient is essentially developing scar tissue in the scalp that is destroying much of their hair.  As the disease progresses (note how it is moving outward in the direction of the little arrows), more and more hair is destroyed.  As this happens, some hairs start twisting and bending - it is during this process that the patient will begin to note textural changes in their hair.  The large yellow arrow shows one of these twisting hairs. There are many causes of hair textural changes but scarring alopecia is one of them. 

Previous blogs for Reference

Scarring Alopecia and the Concept of the "Trichologic Emergency"

Lab Tests for Assessing Thyroid Disease

 

Hair Loss in Black Women: CCCA

Hair Loss in Black Women: CCCA

Central Centrifugal Ccatricial Alopecia (or 'CCCA' for short) is a common cause of hair loss in black women. Some estimates suggest that up to 30% of black women have CCCA. Unfortunately, the condition is very much underrecognized and underdiagnosed. Too often women with CCCA are misdiagnosed as having genetic hair loss - both conditions lead to hair loss in the central scalp.

CCCA causes permanent hair loss in the central scalp.  Individuals affected by the condition sometimes have scalp itching, burning or pain but very often have no symptoms.  This make it difficult to catch the diagnosis in early stages.  Hair loss gets worse over time. The cause is not known at present although hair styling practices and the use of of chemicals and relaxers continue to be explored as causes.

How can we improve our ability to diagnose CCCA?

CCCA is underrecognized in the medical community and underdiagnosed.  How can we train more physicians to recognize this common condition? Certainly training others  to recognize this condition is the first step. There is a suprisingly easy rule I teach doctors who work with me in my clinics:

Any black women with hair loss in the middle of the scalp needs evaluation (& possibly scalp biopsy) to rule out the diagnosis of CCCA.

Hair loss from CCCA is permanent. In most cases regrowth is not possible. Treatments help stop further hair loss but are not always 100 % effective. Treatment for CCCA includes topical steroid medications and steroid injections. Oral medications including tetracycline based antiinflammatory drugs can also be used. Hair transplantation can be successfully used to restore hair density once the condition becomes quiet.

Hair loss and lupus: Doc, do you think my hair loss could be from lupus?

Hair loss and lupus:

Anyone who is losing hair knows how frustrating it can be to find accurate information. It is often difficult to figure answers by searching the internet. Confiding in a friend about hair loss leads to one piece of advice, while a second friend offers completely different advice. It seems daunting to pinpoint which of the 100 causes of hair loss are responsible.

In the search for answers, it's not uncommon for a patient to ask me "Do you think my hair loss could be from lupus?" Are you going to test me for it?

What is lupus?

Lupus, also known by the medical term "systemic lupus erythematosus" is an autoimmune condition. It has the potential to affect nearly every body system from the skin to heart to lungs to brain to kidney (....and that is why the word "systemic" is used). It affects approximately 50 out of every 100, 000 people. Current estimates suggest there are 500,000 individuals in the USA and 50,000 individuals in Canada affected by lupus. Women are affected nearly 9 times more commonly than men. Black women are particularly affected.

What are the signs of lupus and should I get tested?

For every patient with hair loss that I see, I run through a series of simple "screening questions. " If the answers to all these questions are "NO" then I usually don't give any further thought to the patient in front of me having lupus. If the answer to one or more of the questions is "YES" it certainly does not mean the patient has lupus, but means that I might ask more "in depth" questions.

Typically, my "screening questions" for lupus that I ask patients with hair loss include the following 13 questions:

HAIR CLINIC SCREENING QUESTIONS FOR LUPUS:

1. Have you been experiencing extreme levels of fatigue lateley?
2. Do you experience headaches... and if so...how often do you get them?
3. Have you ever experienced a seizure in your life? how many?
4. Do you see or hear things that you think other people might not hear or see?
4. Do you have joint pains ...and if so ...which joints?
5. Do you have high blood pressure? Has it been difficult to control with medications?
6. Do you have pain in the chest when you take a deep breath?
7. Do you experience dry mouth or dry eyes?
8. Do you experience ulcers in the mouth, nose (and for women in the vagina) that you are aware of?
9. Do you develop rashes on the face or skin when you go out in the sun? Do you find you burn much easier than before?
10. Have you ever been told you have abnormal blood work results? ( especially, low hemoglobin, low white blood cells, low platelets)
11. Has anyone in your family been diagnosed with lupus in the past?
12. Have you ever had a blood clot?
13.(Women) Did you ever have a miscarriage and if so, how many?

Many, many individuals will answer " YES" to a question or two from the above list. It does not mean they have lupus. But if they answer "YES" to a few questions it points me down a path of very, very detailed questioning. The formal American College of Rheumatology criteria for diagnosing lupus can be found by clicking here.


Should I get a blood test for lupus?

The vast majority of patients with hair loss do NOT need to have a test for lupus. This can't be overstated enough. However, if the answers to a few of the screening questions above are " YES" then testing 'could' be at least considered. If I am even slightly suspicious, I usually order a blood test known as the ANA (anti-nuclear antibody test).   If the ANA blood test returns "positive", additional blood tests (Group 2) may be ordered. It takes alot of experience to interpret these tests and it can sometimes be challenging to diagnose someone with lupus.  Referral to a rheumatologist is often required.

Group 1 test for lupus

ANA (anti- nuclear antibodies)

• 99 percent of people with lupus will have a positive test. However, many other conditions (and even normal healthy people) can have a positive ANA test. So having a positive ANA does not necessarily mean you have lupus.  Rarely, patients with lupus can even have a negative ANA test (especially early in the disease).

Group 2 tests for lupus (ordered if the ANA test is positive)

1. CBC (complete blood count)

• Individuals with lupus may have low levels of red blood cells, white blood cells and platelets

2. Urinalysis

• To check if there is protein or blood in the urine. This can be a sign of kidney damage.

3. Creatinine

• Another measure of kidney health. Patients with kidney disease may have increased creatinine levels.

4. ESR ( erythrocyte sedimentation rate)

• A measure of inflammation in the body. Many conditions can increase ESR, not just lupus.

5. C3 and C4 (complelment levels)

• Complement levels may be lower in patients with autoimmune diseases and used to monitor activity of the disease

6. ENA (extractable nuclear antigens) which include the anti-Smith test

• The ENA test measures many antibodies, including Jo, Sm, RNP, Ro, La, Scl-70. These antibodies can be positive in many different types of immunologic conditions. Patients with lupus may have a positive anti-Smith test (and sometimes other positive results from the ENA panel of tests too).

7. Antiphosphopilid antibodies

8. Anti-ds DNA test (anti-double stranded DNA test)

In summary, is the diagnosis of lupus should only be made by a medical professional. There are well over 100 causes of hair loss and certainly lupus is on that list and therefore needs to be at least considered. Simply having a positive ANA test doesn't automatically mean an individual has lupus. Obtaining a very detailed medical history and performing a detailed physical examination is very important in the overall evaluation of a patient suspected of having lupus.  Because lupus is a disease that affects many organs in the body, patients diagnosed with lupus are often treated by rheumatologists as well as other specialists (cardiologists, respirologists, neurologists, nephrologists, dermatologists).