Alopecia Support Thread [Areata, Totalis, etc.]

Last edited by Jane on Sat Apr 26, 2014 10:16 pm; edited 15 times in total

Whatever type of hairloss condition you have, please feel free to talk about it here.
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Anyone with auto immuno disease that causes Alopecia (areata)?

If you have a milder form such as Areata, What is your treatment regimen if any (steroids, do nothing)?

Do you rely solely on kenalog injections or do you use combination therapy (kenalog and prednisone pills)?

How do you cope/destress/Camouflage (wigs, scarves, therapy)?

Has anyone investigated the implications of hair multiplication/cloning therapy research on those living with Totalis, Universalis or other forms of alopecia?

Has anyone found that gender or ethnicity (negatively) affect treatment or quality of medical dermalogic services?

How do your acquaintances (or potential SO's) react when you tell them of your immuno disorder?

Anyone know of any great kenalog specialists or clinics that treat Alopecia? Please post them, here!
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**There is no cure of (or prevention for) alopecia, the main purpose of treatment is to disrupt episodes and to jumpstart the recovery process, triggering faster regrowth than may be possible when left untreated.**

It’s important to note that, technically, regardless of the severity of hairloss, for the majority of auto-immuno hairloss patients regrowth is always possible, because actual follicle production is not affected in that despite the ensuing hairloss (which is the simply the physical by-product of the activity of this immuno-disorder), the hair follicles themselves, remain alive and are ready to resume normal hair production whenever they receive the appropriate signal as occurs during a normal growth cycle (although new hairloss episodes may still occur, and regrowth of all the hair may take many months or years between more severe episodes, which makes regular medical treatment a necessity for many patients, particularly if more prolonged or overlapping episodes tend to occur). And while initially, regrown hair may appear very fine (or white), over time it will recover most or all of its normal color and texture.

The most successful treatments for Alopecia are:

1. Injectable Corticosteroids (mild to moderate episodes in which hairloss is less than 50%)

2. Anthralin 1% (mild to moderate episodes / and in combination therapy for some severe cases)

3. Oral Corticosteroids (for severe episodes in which hairloss is greater than 45%)

4. Topical immunotherapy (for patients with more than 50% hairloss as in severe cases)

5. Stem Cell Therapy (in the medical pipeline: currently being researched for possible future treatment protocols)

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1. Topical immunotherapy. Contact therapy treatment in which chemicals such as diphencyprone (DPCP) or squaric acid dibutyl ester (SADBE) are applied to the scalp to produce an allergic rash as a part of the recovery process. Approximately 40% of patients treated with topical immunotherapy will regrow scalp hair after about six or more months of treatment.

Continuation of topical immunotherapy treatment is often required to maintain regrowth (at least until the disease goes into remission).

2. Corticosteroids. Anti-inflammatory drugs that reduce pain and swelling. These allow hairs to regrow by decreasing the activity of the white blood cells attacking the follicles. Corticosteroids suppress the immune system and may be administered to treat alopecia areata via local injection to the affected area/s 9also the most effective/successful method of treatment), orally (if hairloss is greater than 50%) or topically (in cream form—topical creams are least effective and generally will not regrow hair) :

a.) Local (intralesional) injection. Hairless patches on the scalp or other areas (e.g., beard) may benefit from the injection of corticosteroids. The injections provide small doses of cortisone (brand name Kenalog 20; commonly used generic Triamcinolone) to the affected areas, allowing hair to grow. Episodes of hairloss greatwer than 50% typically are not treated this way for a variety of reasons (e.g., number of shots required, increased risk of side effects).

b.) Oral corticosteroids. These are often used to treat cases of more extensive hair loss. Cortisone taken internally is much stronger than local injections of cortisone into the skin, and due to the possibility of certain serious side effects (e.g., cataracts, high blood pressure, loss of bone density) oral corticosteroids are typically used over relatively short periods of time.

c.) Topical ointments. Alopecia areata may be treated with ointments or creams containing corticosteroids. However, research has shown that topical steroids tend to be much less effective than medically injected steroids or those taken orally.

3. Anthralin 1%. A tar-like substance that suppresses immune function in the skin. Used to treat certain types of psoriasis and alopecia areata. It is applied topically to the affected area for short periods of time (approximately 20-45 minutes, but never longer than one hour). As with injection therapym the benefits of Anthralin are cumulative and may take 12 weeks or more for regrowth to begin. For best results, Anthralin 1% topical cream is used in combination with (injectable or oral) corticosteroid treatments. Note: Anthralin can cause temporary, discoloration of the treated skin.

4. Sulfasalazine. Often used to treat other autoimmune diseases (e.g., psoriasis, rheumatoid arthritis). Not unlike corticosteroids, Sulfasalazine also suppresses the body’s immune system and may be effective in treating mild forms of alopecia areata. Unfortunately, due to the increased risk of infection, skin cancer and other serious side effects, Sulfasalazine is not the preferred treatment for most patients.

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Top Recommended Alopecia Specialists/Clinics

1. Crutchfield Dermatology
1185 Town Centre Drive
Suite 101
Eagan, MN 55123
Phone: 651.209.3600
http://www.crutchfielddermatology.com

2. Bellevue Medical Center-NYC (near 27th/1st ave)
Bellevue Hospital Med Center Dermatology Clinic in NYC
(212) 562-4045 general tel

3.Dr. Alexis, Director of the Skin of Color Clinic in NYC
a) Skin of Color Clinic at St. Luke's-Roosevelt Hospital Center
(Upper Manhattan/Midtown)
425 West 59 th Street, Suite 5c
New York, NY 10010
(212) 523-6003 / (800) 753-3239

4. Dr. Fan Cook-Bolden
20 E. 66th Street
New York, NY
(212) 249-8377

5. Dr. Roberta Lucas (Northwestern Memorial Physicians Group)- River North Office
310 W. Superior, 3rd Flr.
Chicago, Il
(312) 926-3627
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If it is permananet/scarring type hairloss then try these (dermatologic surgeons) or other doctors in your area.

1. Dr. Jeffrey S. Epstein, MD, FACS (305) 666-1774
Foundation for Hair Restoration (he does work with women and men)
www.foundhair.com
Sunset Professional Building
6280 S.W. 72nd Street (Sunset Drive), Suite 504
Miami, FL 33143

2. Dr. R. Martin Earles, MD, PC
2930 S Michigan Ave.
SUITE 102
CHICAGO, IL 60616
(312) 225-7200

3. International Society of Hair Restoration Surgery Search
Dr. Paul T. Rose, MD, JD (813) 882-9986 / 1 -877-345-HAIR (877-345-4247)
www.getfithairs.com
5210 Webb Road
Tampa, Florida
E -mail: [email=//info@thehairlosscure.com]info@thehairlosscure.com[/email]
http://www.ishrs.org/doctor-search/bio.php?RegID=9270

FYI [ About Treating Alopecia with Kenalog Injections]!
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Medical Dermatologists now treat lots of different forms of alopecia with the steroid Kenalog.

Kenalog 20 is the brand name for the cortecosteroid injection therapy (Triamcinolone is the commonly used generic). Every 4 weeks, they inject the bald/thin patches directly with the steroid solution (a good injection would be about 20or more pricks for each nickle-to quarter size region in covering the area or areas) it's part kenalog diluted with a sterile saline and injected for anywhere from 4-6 months or longer, until the patch fills back in.

It’s important to note that Steroid Injections treat the disease on two levels; first, by inhibiting the body’s auto-immuno response that triggers the hairloss, itself and secondly, by counteracting the follicular dormancy by stimulating the follicles out of hibernation through direct contact via intralesional injection at the site/s of hairloss (or thinning) induced by chronic alopecia episodes (thus, encouraging remission/regrowth to begin). The beneficial effects of this therapy are cumulative, making both, consistency of treatment and appropriate (generous injection technique) dosage per treatment, important (too little medicine will not be of encourage recovery).

A basic dose per monthly visit should be in the range of about 1.0-2CC of steroidal medicine (sometimes more for more severe or pronounced episodes--the more hairloss or more numerous or large the bald/thin spots are in the affected areas, the more medicine needs to be injected and maybe vise-versa if it is less severe, but 1-CC per/each monthly injection (for however many months) is about the lowest injection dosage of kenalog used to be effective).

About Combination Therapies: Kenalog is the only steroid injection that actually stimulates remission and re-rowth. Topical medications do not have this effect. Any topical is used in conjunction with the injections, but never on it’s own (even the old topical Anthralin 1% (brand name Psoriatec [formerly Dithro-Scalp? or AnthraDerm?]) must be used in conjunction with the shots for desired results).

And any medical professional telling you anything differently than that, just doesn't want to help. Also, it is a medically verified, known fact that the same steroid injection treatment protocol used in treating chronic auto-immuno related Alopecia (areata, etc) are also used to treat other forms of (traction or chemical style related) alopecia. But, it is important to note that in either case, the effects of Kenalog injections are cumulative over time, so it is essential to maintain consecutive monthly injection treatment regimens for short-term AND long-term treatment of any type of Alopecia episode being treated with corticosteroid injections (for example: 6- 8 consutive monthly injection treatments may be neccessary for shorter term therapy of less than 7months—However, as many or more than 10-14 monthly injections treatments may be required to produce results in the case of more for severe/extended episodes over a 12month period--as the worse the episode, the longer it will take to heal, even with the Kenalog injection therapy)...

And also, (generally speaking), any hairloss episode (that is not androgenetic/male-famale pattern baldness related ) that is presenting as less than 50% of loss of total head of hair is treatable with traditional intralesional corticosteroid injection therapy (a.k.a. Kenalog). And if for some reason it is more advanced, traction can be treated with (steroid and/or micro follicular transplantation).

Although many style-traction patients are referred out to cosmetic dermatologists because of the insurance issue (and they/derm's make a lot of money from these patients), it (stlye related or traction forms of Alopecia) can and is also treated with traditional intralesional Kenalog medicines unless it is scarring (however for that determination to be made, an attempted 4-6 month injection treatment protocol would have to be attempted---sometimes longer may be required dependeing on the severity of the episode) and only then would you need surgical restoration (FUE). Also, an important thing to note is that most people who have traction hairloss also have other (undiagnosed) forms of alopecia and may also present as other 'classic' auto-immuno clusters such as eczema, psoriasis, hayfever and/or asthma (although we are focusing on non-traction hairloss, it's still relevant information)...

Also Note: Corticosteroid injection therapy [kenalog (brand name) or triamcinolone (generic name)] works on all forms of hairloss, irregardless of whether or not they are a carrier of male-female pattern hairloss gene (also called androgenetic alopecia) - although andgrogenetic patients are diagnosed early on through genetic screenings similar to those that identify carriers of more serious genetic traits such as food allergies or cancer cluster/s.

Lack of insurance (or funds) should not prevent you from seeking medical support of any kind. And it is important to note that Kenalog therapy is also covered under most insurance (including medicare/medicaid--so, they can afford to administer treatment). But, even if they don't take your particular insurance, public/teaching hospitals also have sliding scales, payment plans, etc. (and also cannot turn away patients as they receive federal funds and grants due to their special status as 'teaching' facilities). If anyone seems hesitant in administering treatment or refuses to at least attempt the therapy for a period of months, seek another 'medical' opinion... Try one of the local dermatology clinics attached to universities in your region or any female dermatologic specialist in your area as most alopecia patients report that Women dermatologists tend to be more sensitive and more likely to give more thorough treatment and exams, etc..

The only real difference betweeen going to a private medical center and a teaching hospital is that medical insurance may not cover the costs and you might have to pay out of pocket. But you can and should seek treatment!

The steroid therapy only speeds up the recovery, but when you have frequent or long term episodes, every little bit helps.

And the same is true for non-scarring traction. It will take longer, but you won't need surgery unless there's no response within 4 treatments (which would be the only way to really tell if there is scarring)... Also, an important thing to note is that most people who have traction hairloss also have other (undiagnosed) forms of alopecia...And don’t be fooled by the Minoxidil Myth --Over the counter products such as Minoxidili, only superficially address the symptoms but do not and cannot medically treat the condition. Minoxidil tricks the body by inducing a hormonal response, which is why the hair can grow back, but it is NOT addresssing the issue medically, which is why the hair falls out as soon as you stop using it and also is also why you have uncontrolled response (facial hair, excess body hair, allergy, etc). Women should not use products containing Minoxidil or Finesteride. There is a risk of severe allergic reaction in women than men.

Kenalog injections actually address the auto-immuno disruption, medically while also stimulating the follicles, which is why it is used in treating many different forms of Alopecia (including, Areata and Traction).

But, it’s important to note that the cosmetic dermatologists who perform transplants also utilize the Kenalog (or Triamcinolone) treatment therapy. The only thing is you would probably have to pay out of pocket, which is why it's always best to have an assessment at a medical dermatology clinic/hospital first to determine the care you are eligible for.

And once you have been treated, you don't lose the hair (unless you have another separate Areata episode--, but that's the nature of the condition) But it is the only thing that triggers the body's own natural response to help the hair re-grow on it's own. So, while you may need periodic treatments over the course of your life-time depending on how often your body’s immuno-functions become destabilized (triggering and Areata episode, etc.) , there is treatment available. Not only does Kenalog work, it is still covered by most insurance.

But, regardless of whether it is immuno related or style-stress related, as a patient, you are entitled to a physician’s best effort. They take that oath for a reason and whether they specialize in medical or cosmetic medicine, it's their job to provide sound, qualitative treatment (or at least refer you out as needed) It's also the law.

Unfortunately, for many (immuno/chronic) dermatology patients, the issue is not one of medicine, but quality of care (especially for those who can't afford private medical dermatology care or who display as adults or later or have medicare/medicaid restrictions, they are often underserved and sometimes not at all), so it's important to follow changes in medical protocols very carefully, because those left out of the loop are usually the ones with life-long chronic supportive needs and can't afford privatized medical care, but also cannot afford to go without necessary dermatologic treatment...

There are lots of great doc's who care about patients without regard to insurance. Don't let yourself be under served. As they say, information is the best preparation.

( And you may also consider filing a complaint with the Hospital Administrator and/or AMA—You do have rights).

And in the end being a proactive assertive patient will only benefit you and the quality of care you (and other patients) receive. Do your research.

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2016 Updates!
In 2014 there was a lot of talk about the UK Essential oil Study in which a combination of oils in a carrier oil blend showed significant (and in some cases total) regrowth of hair after use for several months on the affected areas (A lot of people have reported success with the UK esential oil blend therapy and also using castor oil plus emu oil):

1. UK EO Blend;
about 5-6 drops of each eo; rosemary oil, lavender oil, thyme-white oil, cedarwood-atlas oil in a 1/2 ounce base oil carrier blend of pure grapeseed oil and jojoba oil-- you can also do a search online for the study and their specific ratios used on patients.

2. Castor Oil plus Emu Oil:
Now Foods Solutions Golden Castor Oil (the regular food grade yellow one) or Tropic Isle Jamaican Black Castor Oil used twice daily, alternated weekly with Emu Oil for several months. There is a lot of info on youtube about either type of Castor Oil and Emu Oil use...
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Additionally, there are currently 2-known successful
NON-surgical medical treatments for hairloss (specifically alopecia):

1. Kenalog Injections (a type of rx-medical corticosteroid injected directly into the scalp of the affected areas (about 1-2cc every 3-4 weeks for several months to stimulate regrowth--works best in cases of less than 30-40% total hairloss as in alopecia areata and mild cases of traction hairloss) **

2. Tofacitinib (an oral rx-prescribed medication originally used to treat rhumatoid arthritis and cancer symptoms in patients... That in a Yale study (2014) was found to regrow hair in alopecia-totalis patients who had not grown hair for a number of years. Suggested efficacy is for alopecia-areata and alopecia-totalis patients--). **

3. Carboxy Therapy. A type of mesotherapy, which can be used to treat many conditions ranging from under-eye circles, crepey eye wrinkles, neck and forehead wrinkles, cellulite, stretch marks, hairloss and even aid in minor weightloss.

4. PRP + Acell Combo Therapy. Used to stimulate regeneration of hair growth by re-activating/stimulating follicular activity in the scalp. Results are often seen within two rounds of treatment of the combined therapy. It’s important to only use the combined Acell + PRP treatment as medical research has shown best results when PRP was combined with Acell treatment for hair re-growth allowing for the best possible outcome and reducing the number of total treatments needed as compared to when PRP was used alone. For those undergoing hair-restoration surgery, when this procedure is utilized in combination with the surgery on day of surgery, it encourages stronger, faster re-growth and fut/fue graft retention rates. On it’s own, this combination treatment is best utilized 1-2 years after the last of any hair surgery procedure has been completed.

Most Effective Surgical Solutions include;
1. Micro-FUT (traditional strip) surgery. Recommended for both male and female patients with sufficient donor hair (harvested from the back of the head) with mild, to moderate chronic hairloss usually treatable with surgery at anywhere between 5-35% baldness). Depending upon donor density in this procedure up to 3400fut-grafts may be harvested per surgical procedure. Depending upon hairloss, may require up to 4 or more surgeries even with 2800fut-grafts transplanted per procedure.

2. Micro-FUE (robotic non-scapel) surgery. Due to the technique, this procedure is recommended most for male patients with less than 10-15% hairloss in the affected areas, who plan to keep their hair cut short. in this procedure up to 3000-fue grafts may be harvested per procedure.

Also- it's important to note that research has shown many women are allergic to ingredients in Minoxidil type products and should avoid them as they may cause facial/beard hair , scalp inflammation and further hairloss to occur over time..

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Informational forums with surgeon reviews and cloning and hair multiplication and current FUT hair restoration surgery and other hair restoration technology research in the pipeline can be sourced (online) at:

Hairrestorastionnetwork.com
Baldingblog.com

Where To find Hair Restoration Surgeons
https://www.hairtransplantnetwork.com/Consult-a-Physician/hair-loss-doctors.asp

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