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).