CARF 2018 Conference Notes:

First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.

The CARF staff and volunteers are friendly and eager to help each of us. The doctors who presented information are compassionate towards us patients and passionate about their research to find the cause and cure for cicatricial alopecias. I’ve never been to a conference where presenters are so accessible to the attendees, eating meals with us, mingling with us, and answering our zillions of questions.

CARF will have a new website launched soon. I encourage you to check it out when it goes live and at the very least, sign up for their e-newsletter. They will be bringing back the physician referral list, launching an anonymous online support group (especially helpful for those of us who aren’t on Facebook), and providing ways to connect to support groups in your area. Don’t have one in your area? Considering starting one! There are so many others just like us who we can be of support and compassion to in this journey of scarring hair loss.

Now, a few quick words: this will be a lengthy post. I have 12 typed pages of notes from the day and a half seminar! I will do my best to condense the information and provide topic headings in case you want to skip over things. Also, just a disclaimer that I am NOT a physician, I am a patient, and these are my personal notes as I heard them and nothing here is meant to diagnose, treat, or cure any scarring hair loss. I hope this information will be helpful to those seeking answers.

If there is anyone on here who also attended CARF, feel free to add things I’ve missed or correct any mis-information.

WHAT CAUSES CICATRICIAL ALOPECIA (CA)?

Dr. Jeff Donovan, Dermatologist from Vancouver, Canada

• New and upcoming research in three areas are going to be key to getting closer to a solution: genomics (dna), proteomics (proteins in the cells), and lipidomics (fats/lipids in the cells).
• Random factoid: We are born with 100k follicles on our scalp.
• Dr. Donovan did a great job explaining in layman’s terms what has happened to our hair follicles. For those who have non-scarring alopecias, their hair follicle gets attacked at the very root of the follicle. It causes the hair loss but it isn’t permanent. For those of us with CA, our hair follicle is attacked at the “bulge”, a bump 2/3 of the way up the hair shaft. This is the key area involved in scarring alopecia. This is where the stem cells are located. Stem cells are what generate new hair as existing healthy hairs go through a normal cycle. Because the inflammation attacks the bulge, our stem cells there are destroyed preventing new hair growth from that follicle ever again.
• The other thing that disappears in those of us with CA are the sebaceous or oil glands near the surface of our scalp. The oil gland is necessary to help lubricate the hair follicle, help hair grow, etc. (Hmm, is there any connection to my dry facial skin, dry eyes, dry everything? More on that later…)
• What is still unknown is the process or trigger which leads to the destruction of stem cells in the bulge and loss of oil glands.
• Are there common findings for scarring alopecias?

1. Most have inflammation in mid to upper part of hair follicle which destroys the stem cells
2. All CA show loss of sebaceous glands – is this really important? Yes. It’s needed for normal hair functioning.

• In early CA, inflammation isn’t really active – it’s mild
• Deregulated lipid metabolism is proposed to be a cause of inflammation in scarring alopecia. Altered lipids are important to how CA develops – pro-inflammatory and toxic sebaceous glands
• Disruption of the PPAR gamma gene has an important role in LPP and other CA. PPARs control inflammation, scarring, blood sugar, fat cells and lipid metabolism. When PPARs are disrupted, it causes abnormal inflammation, abnormal scarring, abnormal blood sugar, and abnormal lipid metabolism.

USEFULNESS OF THE SCALP BIOPSY

Dr. Michael Ioffreda, Penn State Health, Hershey Medical Center

• Doctors can’t tell much from just looking at the hair alone. They need to get down into the scalp to see what is going on (so, in a nutshell, YES, getting a biopsy is useful).

• Doctors use a 4mm punch biopsy to extract a sample of your scalp after administering a local anesthetic. They then do horizontal sectioning and vertical sectioning of the sample and look at it under a microscope to see what is happening. Some say two biopsies from different areas of the scalp may be helpful.
  • If you want a diagnosis, the doctor should take the biopsy from the edge of the affected areas
  • If you want a prognosis, the doctor should take the biopsy from the center of the affected area
  • Where the biopsy is done matters. It needs to come from the area of hair loss.
• FFA looks like LPP under the microscope, but the inflammation in FFA is not as dense.
• Stem Cell research – goal is to find a treatment that will reverse hair loss and create new follicles. The only way to get new hair to generate is to create a new hair follicle. There are stem cell based therapies using tissue engineering that are being developed.
• Studies have been done showing that where mice have wounds on their skin, hair follicles are generating. A company called Follica is looking to replicate this in humans. There is a possibility of creating wounds on the scalp then then adding growth factors to grow new hair – will see more on this in the next decade.
• Penn State has a cutaneous regeneration initiative in progress.

BASICS OF LPP, FFA, CCCA

Dr. Kathie Huang, Harvard Medical School, Brigham and Women’s Hospital, Boston, MA

*Note – the majority of conference attendees have LPP and/or FFA with a lower number of CCCA represented

• Definitions:
  • Alopecia: hairloss of any type – partial or complete absence of hair on the body
  • Cicatricial Alopecia: scarring hair loss – hair is replaced with scar
• Lichen Planopilaris (LPP): primarily affects crown of the head, itchy and flaky – lymphocytes are what attacks the hair follicle at the “bulge”. LPP is becoming more common over time. Range of inflammation and symptoms vary among patients. There can be other clues in the body to diagnose LPP such as lichen planus in ridging of fingernails, orally in the mouth, skin rashes, etc. Prognosis and course of LPP is unpredictable.
• Frontal Fibrosing Alopecia (FFA): it is LPP in a different distribution – frontal hairline recedes and often affects the eyebrows. There are smooth areas of hair loss, follicular spines and redness around hair follicles. Some have itching or burning symptoms, others have none. Patients often have the “lonely hair sign” – lone hairs all by themselves. Also often have facial papules – bumps on forehead and cheek. Usually affects women post menopause but can affect men and children.
• Central Centrifugal Cicatricial Alopecia (CCCA): Starts in the center of the crown, can be a lot of itching. Some redness and flaking, often no other symptoms. Predominately in African American women. Possible associations with Type 2 diabetes, bacterial scalp infections, acne. Genetics plays a role. Prognosis is unpredictable. Goal is to slow down and stop progression of hair loss. Need to practice gentle hair care, then use topicals, injectibles, and oral treatments.

BASICS OF DLE, DC, AND FD

Dr. Kimberly Salkey, VCU School of Medicine

*Note: There were only two attendees that I’m aware of who had one of these types of CA

• Discoid Lupus: scalp is itchy and sore, worse with sun exposure
  • Cutaneous Lupus: a skin lupus mostly affecting young women, autoimmune condition, those with family history of lupus
  • 3 types – acute, subacute, chronic
  • Treatment – sun protection, stop smoking, topicals and injections, Plaquenil
• Dissecting Cellulitis: sores on scalp, burning, itchy, no response to injections and antibiotics.
  • More prevalent in black men from teens to 30s. Rare in women and children
  • Treatment - surgical
• Folliculitis Decalvans: not very common. Pustules around hair follicles followed by scarring.
  • Found in young and middle aged men, more men than women and more African Americans than Caucasians.
  • Presents tufted hair, abnormal staph aureus, genetic component, immune response to staph bacteria, looks like a dolls scalp

PRP THERAPY

Dr. Ronda Farah, University of Minnesota, Health Cosmetic Center, Lead, Dept of Dermatology

• There is conflicting evidence regarding the efficacy of PRP for CA. Right now the data is focused on androgenetic/pattern hair loss. Pattern hair loss patients clinically do well with PRP therapy. In scarring alopecia the case improvement is variable.
• There are active studies on the efficacy of PRP with LPP and FFA. More to come as studies progress.

JAK INHIBITORS

Dr. Brigitte Sallee, Columbia University

• The drug Tofacitinib (Xeljans) is used a lot for non-scarring alopecia. However, studies are showing that it has also slowed the hair loss or controlled symptoms in 8 of 10 LPP patients with no adverse side effects. Tofacitinib is a JAK inhibitor (you’ll have to google that one if you want more info. A little over my head!)
• Xeljans (usually prescribed for Rheumatoid Arthritis) is a JAK inhibitor. Those patients report seeing an increase in hair growth.

USE OF NARROW BAND UVB TREATMENT

Dr. Maryanne Senna, Massachusetts General, Founder of Hair Academic Innovative Research (HAIR)  

• You can google MGH hair loss trials to see the work she is doing
• There is a small sliver in the UVB spectrum that in small doses can be helpful (nbUVB). It has been used to treat vitiligo, psoriasis, eczema and itch.
• She’s currently doing a study of this with LPP and FFA. So far all 6 patients in this study had reduced scalp redness and it reduced itch for most of them. 83% had increased thickness of their hair shafts. After treatment shows overall decrease in inflammation.
• Near infrared laser typically works better on pattern hair loss (OTC laser combs, helmets)

SURGICAL THERAPIES

Dr. Nicole Rogers, New Orleans, LA

• Hair transplants work best for pattern hair loss, traction alopecia, radiation induced hair loss, scars from facelift, brow lift, brain surgery. They can sometimes transplant stable CAs. Seems like it works better for patients with CCCA.

TREATING ITCH AND PAIN

Dr. Sarina Elmariah, Massachusetts General

• Medical Options:
  • JAK inhibitors makes itch and pain go away
  • Cannabinoids target the nerves that cause itch and pain and inhibits inflammation
  • Gabapentinoids neutralize nerve activity that cause itch and pain. However, gabapentin can make you tired and dizzy.
• Natural Options:
  • Apple cider vinegar and witch hazel are good for burn and itch. Soak a cotton ball and dab affected areas.
  • Avoid lemon juice, tea tree oil and peppermint oil on scalp.

LASER TREATMENTS

Dr. Ronda Farah

• The efficacy of laser treatment is not well known yet; however, it is thought to lengthen the anagen phase of the hair cycle.
• Look up the Spanish study just released 5/2018 by Pablo Fonda-Pascual et al

MEDICAL THERAPIES FOR SCARRING ALOPECIA

Dr. Lynne Goldberg, Boston University School of Medicine

• No individual treatment has been proven to work consistently.
• Treatments include: topical steroids, steroid injections, topical calcineurin inhibitors (Protopic, Elidel), Minoxidil (used to promote growth of unaffected follicles in the area of scarring. Helpful if co-existent pattern hair loss is suspected).
• Tetracyclines: treats wide variety of infections – used for anti-inflammatory properties.
• Topical antibiotics: Isotretinoin – drug used for severe nodulocystic acne – helpful for DC.
• TNF Alpha Inhibitors: used more for several neutrocilic alopecias.
• Lymphocitic CA (LPP): Plaquenil is an FDA approved antimalarial.
• Finasteride – pretty safe. Doctors started using this in 2004 for female pattern hair loss. In 2013, the started using for FFA. It inhibits enzyme 5-a reductase – converts testosterone to DHT. Study showed all 120 patients improved or stabilized. Finasteride is androgen blocking in FFA. Decrease in estrogens could play a part as well.
• Pioglitzone for LPP
• *Note: you’ll have to look this stuff up and study on your own. It went pretty fast and I know I didn’t catch everything that was said about these medical therapies.

NUTRITION AND HAIR

Dr. Yolanda Lenzy, Dermatologist

• Anti-inflammatory diet (AIP) or AIP/Paleo: AIP is rooted in Paleo with additional restrictions.
• Certain foods trigger the immune system. In AIP, you cannot eat nuts, seeds, eggs and nightshades.
• AIP hasn’t been shown yet to induce real change in hair but may help itch, pain, etc (symptoms)
• Nutrition Tips:
  • Tip 1: omega 3 fatty acids (salmon, etc)
  • Tip 2: adequate proteins (lean meats)
  • Tip 3: foods rich in vitamin B (cruciferous greens, nuts, salmon, beef)
  • Tip 4: diet rich in vitamin C (helps the body produce protein which can help prevent breakage of hair)
  • Tip 5: consume adequate iron (ideal ferritin should be > 70) (green leafy vegetables, dried fruits, raisins and dates)
  • Tip 6: adequate zinc (seafood, seeds, lean red meats and poultry, pumpkin seeds)
  • Tip 7: whole grains (increased elasticity of hair)
  • Tip 8: supplement with whole food vitamins (not synthetic vitamins)
  • Tip 9: hair vitamins (look for high doses of vitamin A which can cause shedding)
    • Nutraceuticals (like Viviscal and Nutrafol) can be helpful.
    • Be careful of megadoses of Biotin which can cause labs to be off kilter. Thyroid can show to be low and can also produce false readings on cardiac enzymes.
  • Tip 10: drink green tea (it’s a DHT blocker which is responsible for miniaturization of hair follicle)
  • Tip 11: hair styling (use sulfate free shampoo, deep conditioning, use a leave in conditioner, avoid chemicals, don’t use heat styling too much, change up your hairstyle or your part now and then)

THE MIND BODY CONNECTION

Dr. Maryanne Senna

• Stress is a normal part of life. It releases powerful neurochemicals and hormones and is our body’s natural reaction to danger.
• So what do we do when we find out we have CA? We Google, do diets, watch our hair loss, spend money on solutions, and withdraw from social activities. Rather than spending time and dollars on this stuff, spend it on managing stress with meditation, yoga, hobbies, etc
• Study showed people with high blood pressure who meditated over an 8 week period had a striking change in 172 genes that regulate inflammation, circadian rhythms and metabolism.
• Dr. Senna talked about “immune privilege”. Loss of this immune privilege is thought to contribute to hair loss among other issues. (I’d like to study this one more).
• When stress happens, there is increased signaling from the nervous system, increased neurogenic inflammation, and the hair follicle immune privilege collapses. So how do we rebuild our natural immune privilege? More studies are needed to evaluate correlation to stress.
• Stress reduction needs to be a part of every treatment regimen.
• Apps to download to help with stress reduction: Calm, Headspace, the Mindfulness app, Insight Timer

CAMOUFLAGE OPTIONS FOR SCALP AND EYEBROWS

Dr. Nicole Rogers

• Hair fibers and concealers: Toppik, Exfusion, Nanogen, Go Fiber, all use fibers to create the appearance of thicker hair and help conceal the scalp. It was recommended to use a fixing spray to help keep the fibers in place. Use a shade lighter than your existing hair. The can be irritating to some people. Patients in the room preferred shaking it on vs using the balloon tool you can get from Toppik.
• Root concealer spray: Such as Bumble and Bumble, Rita Hazen brands, are easy to use. Hair may feel a little chalky when applied.
• Powder cakes: a more waterproof option. Dr. Rogers really likes Joan Rivers’ “Great Hair Day”. Powder cakes are a great option for those with FFA to help conceal area around ears/sideburns. Some brands include Couvre, Salon Grafix powder, CRC Concealing Color, dermMatch (also highly recommended). Can use powder in conjunction with hair fibers.
• Other tips: grow your hair longer and use that hair to help camouflage. Try a new style to make hair look fuller. Change your hair part or zigzag the part. Go gray, add highlights, use high hold hair sprays.
• Hair Prostheses: wigs, toppers with clips, bonded hair pieces.
  • Note that clips can be damaging to scalp and cause traction alopecia. They recommend if you use clip pieces, move the clips around. Don’t always put them in the same place.
  • You can search for someone who will make custom bangs - great for FFA patients
  • Your Dermatologist may be able to write a prescription for a prostheses
• Tattoos: microblading and tattooing of eyebrows, adhesive eyebrows, scalp micropigmentation (still in infancy)
  • Go to spcp.org to make sure you get a reputable cosmetic tattoo person
• Skin Camouflage: especially with FFA there may be an increased visibility of veins. Product that was recommended is Haute Protection Tinted SPF 50
• Facial Papules: Isotretinoin (Accutane). Note that there are drawbacks to Accutane. Topical retinoids, laser treatments. Dr. Rogers highly recommended Neutrogena Healthy Skin Anti-Wrinkle Cream (Night) – it’s a retinol facial treatment

SAFE HAIR STYLING

Dr. Yolanda Lenzy

• Use Sulfate-free shampoo/products
• Deep conditioning good once/week for frizzy or thick hair
• Use a leave-in conditioner – especially curly and frizzy hair (here! here!)
• If you use heat styling, try to limit to once a week
• Don’t put clips in same place all the time
• Nioxin. There were comments that their marketing is off. They seem to promote themselves as a product for helping with hair loss but they are more of a volumizer with no active ingredients for hair growth.
• Shea Moisture products are good (can be found in Ulta and drugstores)
• Coloring your hair is OKAY. Several doctors recommended having a “patch test” done first to ensure you aren’t allergic to any of the ingredients. If you aren’t allergic, it’s okay to use. They do not have any evidence that hair coloring causes CA.

Q&A (a collection of questions asked by attendees throughout the conference)

What triggers this process?

Environment and Genetics. Genetics are not found to have a link with LPP or FFA. Genetics are more prevalent a cause in CCCA. Environment: infection such as staph has some role in Folliculitis Decalvans. Trauma or injury to scalp can play a role. Sunscreens – still not enough data to be sure that sunscreen plays a role.

What triggers LPP?

Still don’t know. Drugs, viruses, contact sensitizers such as hair dyes, sunscreens, makeup, are all still being researched.

Androgens?

• Androgens - male hormones - may play more of a role in FFA. This is why the drugs Finasteride and Dutasteride are used for FFA.
• It is hypothesized that a decrease in estrogens could play a role in the cause of FFA in women.
• In one study:
  • High incidence rate of early menopause compared to the general population
  • A considerable number of women had undergone hysterectomy

What is the goal of treatment for CA?

At this point, the goal of treatment is to stop inflammation and slow or halt the progression of hair loss. This is accomplished using topical treatments, injectables, oral medication, or excimer and other laser treatments.

What do the doctors need most?

• Funding for research
• Physician time to do the research
• Requested our assistance in lobbying politicians who believe in science and research to invest in funding these studies
• Good photographs taken consistently over time REALLY help doctors track progression. If your doctor doesn’t take them, YOU take them.

What if my insurance doesn’t cover testing or treatment for CA?

L66.1 is the code that should be used – not a guarantee it will work but this is the one the doctor panel said to use. Doctors shouldn’t use the standard code for “alopecia” as some insurances may not accept this.

Do we know if CAs really burn out?

              We do not know for sure at this time.

If it burns out, is it for good or will it come back?

Also unknown.

How often should I go back to my doctor for follow ups?

Doctors usually space out visits as treatments progress. From several times/week, to once/week, to once every other week, to once/month and so on.

Do you need a biopsy to confirm burnout?

Doctors said YES. That is the only way to truly know. It will confirms a lack of inflammation.

Is there a correlation of thyroid disease and CA?

Hair loss from a thyroid condition is a separate cause and not related to CA.

Can I have more than one type of hair loss?

Yes, you can have more than one type of hair loss. In fact, there is a fair amount of overlap.

What about sunscreen?????

Avoid chemical sunscreens. Titanium dioxide okay. Blue Lizard Baby or Sensitive are good options. Look at your cosmetics too. Err on side of caution and eliminate the chemical sunscreens. That said, they really don’t know yet if sunscreen is a cause of CA.

Are there any other conditions of health that seem co-mingled with CA?

Yes, there can be – especially other autoimmune disorders. Make sure your primary doctor is looking at your overall health picture.

Is CA an autoimmune disease?

Yes, doctors thought it is an autoimmune disease – it does fit the classification. LPP patients tend to have other autoimmune issues going on.

What about my dry eyes, dry skin, rosacea? Is there a link?

Yes, there is a link with the loss of sebaceous glands affecting other areas – particularly in FFA – dry skin, dry eyes, and rosacea.

What about gut health?

Not much was said about this other than that the doctors agree gut health affects many areas of the body

What drugs should I stay away from?

Doctors encourage us to go to pubmed.org to research drugs and side effects. Look at the side      effects when you are prescribed something. If you aren’t comfortable with taking the medicine or if you see something in it you are allergic to, don’t take it.

What foods should I stay away from?

We all metabolize foods differently - just know your own body – whatever makes you itch, bloated, etc, just avoid them. A full elimination diet like AIP – one doctor said it’s hard to recommend it to people until there is more information. It can’t harm you – may make you feel better overall – but no research or evidence it helps with hair loss.

What alternatives are there to sunscreen?

Search for SPF clothing (Land’s End was one brand mentioned) to protect from the sun.

Is it helpful to have my cortisol and/or DHT levels tested?

Doctors don’t normally test these. Cortisol is hard to test for. There is no data on this. Hormone levels usually test normal with pattern hair thinning. (I have FFA and my hormone levels all test normal)

Is there a link to menopause?

When the sebaceous glands shut down - they go almost to 0 – skin gets dry, vaginal dryness, hair texture changes – and those who are predisposed to get CA, menopause activates the process of sebaceous gland shut down (as well as destroy stem cells as mentioned earlier). There is a study by Kossard on menopause and FFA you can read – it’s on pubmed.org

Does taking Dutasteride increase my risk of breast cancer?

There are no direct studies on this. But if you have a family history of breast cancer, the doctor recommended not to take Dutasteride or Finasteride. In fact, some doctors won’t prescribe it to you if you have a family history of breast cancer.

Is it safe to color my hair?

Again, doctors recommend to do patch testing to determine if you are allergic to an ingredient. If not, it’s ok.

What’s a good solution for facial papules?

              Retin A products seem to work well for this.

Other tips from show and tell time:

              Hair Camo: Hair Direct, Derm Match, Boost n Blend, Toppik, Couvre

Eyebrows: Anastasia Dip Brow or Sephora brand brow pencils (get it two different colors and blend them. “Model in a Bottle” spray helps set the brow pencil to keep it from rubbing off.

Swimming solution: Nammu swim hats are great to use when you are swimming

Scalp pain or burning: Iced cap, Elasto Gel, bag of frozen peas

At home lasers: Hair Max, Capillus

Hair pieces: we looked at options like wigs, bonded hair pieces, taped front pieces. Davlyn tape was recommended for taping pieces down. You can find this at hairdirect.com