Alopecia areata

[Amethyst]

Seeking experiences (hopefully ones with positive outcomes).  

[Arcadia]

I have chemotherapy in 2019 and lost all my hair. Then had two egg shaped bald patches after my hair grew back. The smaller bald patch (about 4cm by 5cm) has already recovered. The larger bald patch (about 5cm by 8cm) has almost recovered.

 

Edited March 23, 2022 by Arcadia
Deleted photo

[Amethyst]

Thank you for responding. Was any treatment needed, or was it just a matter of time waiting for the hair to grow back?

(Btw, this is for a young adult. Healthy except for her months long struggle with eczema which has caused her to cut back on ALL makeup products. And now this!)

[Arcadia]

I do have asthma and eczema. My older cousin had alopecia too even though he had no illness. His was likely stress related and also recovered with no treatment needed.  His was four or five smaller patches.

I did apply castor oil but it is more to reduce scalp irritation than to speed up hair growth. Since my teens are both high school age, stress could have been a factor as well.

[iamonlyone]

Dd27 has this. She lost much of one side and the back of her waist-length hair at age 13/14. She developed mild vitiligo at the same time. Her hair grew back in white in those areas. It kind of cycled with falling out/growing in for a couple years. It never recovered the volume it had. (Her hair was really thick and is now on the thin side.) She was a rock and kept on living her life, which is hard for any teen, but was particularly challenging as she is a ballerina, so looks are under the magnifying glass. Her hair has a cool, artsy look, which works well for a dancer; however, she sure got tired of strangers telling her that she shouldn't dye white streaks in her hair because she would wish it wasn't white when she was old. It was a good reminder to us all not to make assumptions.

BTW, we read that hair dye can further irritate a scalp and cause the issue to worsen, so she never dyed it. We tried natural herbs (not henna), but it just made it yellowish. Now, as an adult, when she needs it to look uniform for a performance, she applies foundation powder. It works nicely and washes out completely.

 

 

Edited March 24, 2022 by iamonlyone

[J-rap]

I don't have experience with this, but when my dd was seeing dermatologists about her cystic acne, I asked them about zinc supplements because I'd heard it might be helpful for that type of acne.  I had two dermatologists tell me that they didn't know about zinc helping acne, but they did hear about zinc supplements helping hair loss.  

[Spryte]

I have a lot of autoimmune issues, and have had hair loss issues intermittently. How I hate it!

I use Nioxin shampoo, conditioner, scalp therapy, and also use their scalp intensive product (can’t recall the name, small bottle). That, plus staying on top of my meds and making sure my numbers (bloodwork) are good has helped.

[lmrich]

My niece lost a lot of hair, including her eyebrows and eyelashes when she was 12. Then it seemed to go in remission for 8 years. But in 2020, it came back and she started losing more hair. She now wears a wig. Sorry it is not the happy ending you wanted.  She looks great and is a super smart young lady who has loads of potential, but it is not easy. 

[Amethyst]

This is interesting. I originally posted this because just 6 days ago, someone who is VERY VERY dear to me, developed alopecia. It’s just one area right now. Hopefully that’s all it will ever be. But wow it threw me. Her long thick gorgeous hair. I wanted to cry for her. I have. After the initial shock, she has had a surprisingly good attitude. But it’s scary. 
 

And now the Will Smith incident at the Oscars. I don’t like violence at all. I also don’t like mean humor. We all need to be kind to one another. 
 

[HomeAgain]

One of ds's friends has this.  He has had it for at least the 3 years we have known him, and probably before that.  Kids are great.  They don't care.  They may have remarked about a wonky haircut once or so, but once it was explained it was a medical condition they knew it was off limits. Never brought up again.

Adults are the weirdos.  Adults want to know, ask more questions, bring up "fixes" they've heard about online...it's like there's a lack of trust in the parents to do what is best for their kid.

I'm glad at least the next generation is learning the rule of only teasing/poking at what a person can change, not characteristics they can't.

[Amethyst]

36 minutes ago, HomeAgain said:

Adults are the weirdos.  Adults want to know, ask more questions, bring up "fixes" they've heard about online.

One of the depressing things about this is that every mention of alopecia online says “no cure”. Yes, some treatment, like steroids. Periods of remission. Beyond that, it’s all magical thinking. Dh just said he read something online saying “strawberries help with hair loss due to alopecia”.  Which is funny cuz she eats fresh strawberries almost every single day. So, umm, no I don’t think strawberries help.   

Maybe there’s a mab out there for alopecia. We’re not at that point yet since it’s only the one spot and hoping and hoping for no additional spots to show up. 

[CatMom]

My son, now 17, dealt with this for about 2 years. He had two small bald patches. We tried all of the typical treatments, but they never did any good. A couple of times they would clear up on their own and then come back. Then one day they cleared up and have not come back. It’s been about 3 years.

My mom used to work for a dermatologist, and she said that was very common for it to just spontaneously resolve and not return ever.

I was a lot more worried about it than he was. It is very much a wait and see, even now.

 

 

[Elizabeth86]

1 hour ago, Amethyst said:

This is interesting. I originally posted this because just 6 days ago, someone who is VERY VERY dear to me, developed alopecia. It’s just one area right now. Hopefully that’s all it will ever be. But wow it threw me. Her long thick gorgeous hair. I wanted to cry for her. I have. After the initial shock, she has had a surprisingly good attitude. But it’s scary. 
 

And now the Will Smith incident at the Oscars. I don’t like violence at all. I also don’t like mean humor. We all need to be kind to one another. 
 

Someone dear to us is recently dealing with this as well. I feel so sorry for her. She is 11. What a tough age, ya know?

[HomeAgain]

5 minutes ago, Amethyst said:

 

Maybe there’s a mab out there for alopecia. We’re not at that point yet since it’s only the one spot and hoping and hoping for no additional spots to show up. 

A member of my family had significant hair loss.  Hers was from a different condition and was never going to grow there. She did struggle with styling limitations that also made her feel confident and pretty.   And I think that part is more important than fixing the hair loss - keeping up confidence and self-appreciation.  40 years ago, kids were absolutely cruel.  Now they tend to be more accepting, but it just takes one careless comment to hit someone in the gut when they feel vulnerable.  I'm not sure how to help a young adult with anxiety about one of their features, but I think I'd put my emphasis there.

[Amethyst]

33 minutes ago, CatMom said:

My son, now 17, dealt with this for about 2 years. He had two small bald patches. We tried all of the typical treatments, but they never did any good. A couple of times they would clear up on their own and then come back. Then one day they cleared up and have not come back. It’s been about 3 years.

My mom used to work for a dermatologist, and she said that was very common for it to just spontaneously resolve and not return ever.

I was a lot more worried about it than he was. It is very much a wait and see, even now.

 

 

Thank you for sharing your experience! This is pretty much what I’m understanding too. Not much good treatment; if lucky, may resolve on its own. 
 

[Amethyst]

46 minutes ago, HomeAgain said:

She did struggle with styling limitations that also made her feel confident and pretty.   And I think that part is more important than fixing the hair loss - keeping up confidence and self-appreciation.  40 years ago, kids were absolutely cruel.  Now they tend to be more accepting, but it just takes one careless comment to hit someone in the gut when they feel vulnerable.  I'm not sure how to help a young adult with anxiety about one of their features, but I think I'd put my emphasis there.

Thank you. I suppose she is lucky that her spot is in the back of her head and her long hair makes it possible for her to hide the spot. 
She is not happy about it of course, but she has a surprisingly good attitude. The spot was first discovered right before she was heading out to an evening class. She cried, of course, but had to attend the class. She told her friends that were in the class and then she went to a friends house and it sounds like the friends were all so supportive. One told her that if she had to shave her head, she would shave hers too. They discussed wigs. They discussed starting a support group at the college (sort of jokingly). But her attitude was I’m not going to hide it. Well, she’ll try to camouflage the spot, but not hide from friends what she’s dealing with. 

[Mrs Tiggywinkle]

My sister lost most of her hair after a three month struggle with Covid and pneumonia very early on(early enough that they had to drive three hours to find testing; it was late March 2020 I think).  She didn’t want anyone to know and it was a huge struggle for her, plus there was still a lot of Covid stigma at that time.

It was very hard on her emotionally. They did diagnose her with alopecia and while her hair has grown back, it’s still very thin and fragile. She had gorgeous, thick hair before.

 

[Soror]

My friend, with many other auto-immune issues, has alopecia. She wears a wig. I've seen her without it and I didn't notice the bald spots but obviously I wasn't staring at her trying to find them. She's tried all kinds of treatment and not had any luck.

[Amethyst]

The day after we discovered my dd’s alopecia spot, I was at work, and happened to notice 2 older women (separate) with very thinning hair. They had the kind of hairstyle you see on older women trying to disguise their overall thinning hair. My heart just went out to them like never before. Hair. We take it for granted. We complain about it. It’s too thick, too curly, too straight, too dry. But, man oh man, when it’s gone…

[plansrme]

3 hours ago, Amethyst said:

This is interesting. I originally posted this because just 6 days ago, someone who is VERY VERY dear to me, developed alopecia. It’s just one area right now. Hopefully that’s all it will ever be. But wow it threw me. Her long thick gorgeous hair. I wanted to cry for her. I have. After the initial shock, she has had a surprisingly good attitude. But it’s scary. 
 

And now the Will Smith incident at the Oscars. I don’t like violence at all. I also don’t like mean humor. We all need to be kind to one another. 
 

When my now-21 yo was about 3, her babysitter called me to tell me she'd been brushing her hair and a patch the size of a quarter fell out. I left work immediately, went home to see it (and found another one, also quarter-sized) and called the pediatrician begging for a same-day appointment. Shockingly, the front office did not quite see it as the emergency that I did. It is funny now, but it was very much NOT funny at the time. We adopted her from China at 15 months, and she came to us with a host of issues that did not faze me. Attachment? Got it. Rickets? Yep. Multiple cleft repair surgeries? NBD. Positive TB test? Bring it on. But this was HAIR! Hair is important! The dermatologist diagnosed alopecia, offered no treatment options and dismissed my thoughts, which was that it was due to some medication she was on. I took her off of the medication, it resolved and has never returned. All that to say that I completely understand your concern. And also, is the girl on any kind of medication that could contribute?

[Amethyst]

I’d also like to say that I know, and dd knows, that alopecia is not the worst condition in the world to have. It is not life-threatening, life-shortening, or disabling. In one sense, we all know that she is lucky to have this rather than something else more dreadful. I started this thread originally looking for hopeful outcomes and to commiserate with anyone who had been through something similar. I’d still be interested in hearing your stories, even though I think I have more realistic view of this than I did when I started the thread. 

[wintermom]

I know nothing about this condition. Does wearing hats or other head-coverings make things worse for hair re-growth? I'd imagine that covering up the bald areas be somewhat helpful in some situations, if it's a possibility. 

I can imagine the stress that this can bring a person. Our hair is such a big part of our identity, for better or worse. My sister, who is a red head, had her attractiveness, temperament and ability to stand out in a crowd tied to her hair, again, for better or worse. 

Do freckles also 'fall off' along with hair with this condition (just dreaming of a potentially positive side). 😉 

[Amethyst]

9 minutes ago, wintermom said:

I know nothing about this condition. Does wearing hats or other head-coverings make things worse for hair re-growth? I'd imagine that covering up the bald areas be somewhat helpful in some situations, if it's a possibility. 

I can imagine the stress that this can bring a person. Our hair is such a big part of our identity, for better or worse. My sister, who is a red head, had her attractiveness, temperament and ability to stand out in a crowd tied to her hair, again, for better or worse. 

Do freckles also 'fall off' along with hair with this condition (just dreaming of a potentially positive side). 😉 

It seems to be an autoimmune condition. It does not seem to be related to pulling hair back or wearing hair in a bun or anything the person does. Hats and head coverings will not make it worse. The fact that my dd has also been dealing with eczema (also autoimmune condition) makes her more likely to get it. 

It starts with sudden hair loss in a round (quarter sized) area, which is exactly how dd's started. (I'd be inclined to say half dollar sized). There may be other patches, or not. Some might get better while new ones develop. She might develop several at the same time which turn into one big area. She might only ever have this one area and then go into remission and never have to deal with it again. 

Yes, she can currently style her hair by pulling the front back to hide the bald spot. It's not this particular spot that is the problem. It is knowing what could possibly be ahead of her. Because some people get it so bad that they lose all the hair on their head, or all over their body. Time will tell. 

Steroids may or may not help. It's not bad enough yet, and her dermatolgy appt is not until May, so don't know if this is in her future or not. It just started last week.

Yes, I think her long gorgeous hair is part of her identity. Four years ago, for high school graduation superlatives, she was voted Best Hair. 

Lol, no freckles do not fall off. 

[GoodGrief3]

4 hours ago, plansrme said:

The dermatologist diagnosed alopecia, offered no treatment options and dismissed my thoughts, which was that it was due to some medication she was on. I took her off of the medication, it resolved and has never returned.

Oh my goodness, story of my life when it comes to the various medical conditions that have popped up in our family. Thank goodness for Google and Facebook groups, as much as people like to deride those resources.

OP, my daughter developed hair pulling as a young teen, which thankfully we have worked through. I remember the stress of dealing with it though. Hair loss has such an emotional component. I assume you have ruled out hair pulling and feel confident in the alopecia diagnosis?

I have known a few people with that issue, one who sounds very similar to the person in your life, as far as age and dealing with eczema. One person had a father with the same condition and a sibling who was unaffected. There does seem to be a genetic component. I do know these people tried many things, but it did seem to be progressive.

If your insurance/finances allows, I'd be tempted to find someone who has particular expertise in this particular condition (meaning this is what they deal with primarily, as opposed to a typical dermatologist.) as they may have the most up to date treatments.

[Amethyst]

24 minutes ago, GoodGrief3 said:

 

If your insurance/finances allows, I'd be tempted to find someone who has particular expertise in this particular condition (meaning this is what they deal with primarily, as opposed to a typical dermatologist.) as they may have the most up to date treatments.

Not a bad idea. I will keep that in mind. If we ever get to that point. Still hoping this will be a one-time event. My son at a prestigious teaching hospital has offered to get her in to a dermatologist where he lives and works, but none of us are ready to say it's that desperate yet. 

[Arcadia]

I was thinking of trying minoxidil until I read this. I have no interest in using minoxidil long term. @wintermom My mom and I have freckles, they are prettier than age spots 😉

https://www.mayoclinic.org/drugs-supplements/minoxidil-topical-route/proper-use/drg-20068750?p=1
“If hair growth is going to occur with the use of minoxidil, it usually occurs after the medicine has been used for several months and lasts only as long as the medicine continues to be used. Hair loss will begin again within a few months after minoxidil treatment is stopped.”

[plansrme]

My daughter (the one whose two quarter-sized spots at age 3 made me panic) also had eczema. That eventually resolved, but she still has super-sensitive skin. Did you know a millipede bite can cause your entire forearm to swell up? Yeah, neither did anyone else at urgent care. Ant bites produce red streaks that look like (and have been mistaken as, by ERs--twice) cellulitis. Mosquito bites not treated immediately swell, weep and scar. Lord help us all if she ever comes into contact with poison oak. 

OP, I truly hope this is a one-time thing. I just remember being in your shoes 18 years ago, googling and seeing only the worst outcomes. The fact that worse things can happen to your kid is completely irrelevant.

[Amethyst]

@plansrmeI just want to thank you for being so understanding of the emotional component of this. Holy moly, it sounds like you’ve had a lot going on with your daughter, and I appreciate hearing your experience. 

[KSera]

On 3/28/2022 at 4:13 PM, Amethyst said:

I just want to thank you for being so understanding of the emotional component of this.

(Deleted personal info after OP read)

Edited June 13, 2022 by KSera

[Kassia]

A friend of mine had it.  This is part of what she wrote in response to the WS incident:

 

During my 18 bald years, innumerable people, strangers, co-workers, acquaintances, friends and family, commented on my baldness. Those who did not know me almost always were concerned I had cancer, and shared their compassion, their sympathy, and often their own battles with their own or a relatives cancer themselves. Many gave me the high-fives, a few told me I was hot (usually these were sci-fi fans), and the most endearing reactions were from children, artless, curious, unfiltered children.

Having alopecia was one of the best things that ever happened to me. It gave me a window into what really mattered; it taught me that there are many physical things I could not control, but I could control my reactions both internal and overt. In being open about it, I could give myself and others permission to be honest about it. And words never hurt me. Because I never felt I was wrong for what I was.

We all have a right to our own reactions to events in our lives, and to the responses of these events by others. It was a blessing to me that my own autoimmune disorder was only about hair, not about health. I know many reading this have thought about alo in the past few hours, and I hope this essay makes my own experience clear.

[Arcadia]

https://cnalifestyle.channelnewsasia.com/wellness/alopecia-areata-jada-pinkett-smith-hair-loss-308311
““Other research has found that many people with a family history of alopecia areata also have a personal or family history of other autoimmune disorders such as atopy, a disorder characterised by a tendency to be hyperallergic (and develop) thyroiditis and vitiligo,” noted the same website. 

Despite what many people think, there is very little scientific evidence to support the view that alopecia areata is caused by stress. Extreme cases of stress could potentially trigger the condition, but most recent research points toward a genetic cause.

….

WHAT IS ALOPECIA AREATA’S IMPACT?

The condition has few physically harmful effects (it can also cause nail changes such as roughness, pitting and splitting) and doesn't cause pain. But it can create anxiety and depression in patients – more so in women. “Hair loss in women often has a greater impact than hair loss does on men, because it's less socially acceptable for them”, noted an article on Harvard Medical School’s website. “Alopecia can severely affect a woman's emotional well-being and quality of life.”

That was the situation for Pinkett Smith. In a 2018 episode of Red Table Talk (see video above), a web show she co-hosts on Facebook, the 50-year-old revealed for the first time why she’d kept her hair short. “I’ve been getting a lot of questions about why I’ve been wearing this turban. Well, I’ve been having issues with hair loss.”

…

WHAT TREATMENTS ARE AVAILABLE?

There is no cure for alopecia areata. But because it is an autoimmune disease, some of the treatments available, such as corticosteroids, involve suppressing the immune system to stop the body from attacking the hair follicles. These may be administered through injections, topically or orally.

Other forms of treatment involve stimulating hair growth, such as Minoxidil, which may work better for those with less severe hair loss, according to Healthline. However, the success rate differ from patient to patient and hair loss might recur.”

 

[Ting Tang]

My brother had it around age 12. My parents went so far as to buy him a hairpiece (that didn't go over well). The school wouldn't let him wear a hat.  He got made fun of; he had undergone a lot of painful tests.  He had bald spots on his head, lost his body hair, eyebrows, etc.

 

It lasted a few years.

 

He's 42 now.  He has all of his hair.  It was such a mystery to us then. I remember going to a support group for it. 

Edited March 30, 2022 by Ting Tang

[BeachGal]

Baricitinib looks promising.

https://www.medscape.com/viewarticle/970987?spon=9&uac=428738CV&impID=4123372&sso=true&faf=1&src=WNL_mdpls_220329_mscpedit_peds

[Amethyst]

8 hours ago, BeachGal said:

Baricitinib looks promising.

 

Thank you so much for this!! I’ll have to look the data over carefully. And fortunately she is not at the point yet that we would consider these strong drugs yet. But one of the things I told her last week is that they’re coming out with better and better drugs, so hopefully if she ever needs something strong, there may be options. I was winging it when I said it, so glad to know things are in the works. 

[Arcadia]

https://www.fda.gov/news-events/press-announcements/fda-approves-first-systemic-treatment-alopecia-areata
“Today, the U.S. Food and Drug Administration approved Olumiant (baricitinib) oral tablets to treat adult patients with severe alopecia areata, a disorder that often appears as patchy baldness and affects more than 300,000 people in the U.S. each year. Today’s action marks the first FDA approval of a systemic treatment (i.e. treats the entire body rather than a specific location) for alopecia areata.

….

The most common side effects associated with Olumiant include: upper respiratory tract infections, headache, acne, high cholesterol (hyperlipidemia), increase of an enzyme called creatinine phosphokinase,  urinary tract infection,  liver enzyme elevations, inflammation of hair follicles (folliculitis), fatigue, lower respiratory tract infections, nausea, genital yeast infections (Candida infections), anemia, low number of certain types of white blood cells (neutropenia), abdominal pain, shingles (herpes zoster) and weight increase.  

Olumiant is not recommended for use in combination with other JAK inhibitors, biologic immunomodulators, cyclosporine or other potent immunosuppressants. Olumiant comes with warnings and precautions including recommending close monitoring for the development of signs and symptoms of infection during and after treatment; evaluating patients for active tuberculosis infection and testing for latent tuberculosis prior to treatment with Olumiant; and the potential for viral reactivation. In addition, other warnings and precautions include hypersensitivity (allergic reactions), gastrointestinal perforations (tears in stomach or intestine), and laboratory abnormalities including low white and red blood cell counts, liver enzyme elevations and lipid elevations.”

[Ting Tang]

Oops I already commented!

Edited June 13, 2022 by Ting Tang

[KidsHappen]

I lost a lot of hair last year when I had severe vitamin B12 deficiency but it was evenly all over my head so my hair just became very thin for awhile. However, just last week I noticed a small bald spot about the size of a dime. I don't know if it is natural age related hair loss, alopecia, breakage or from friction. It is at the very back of my part which makes it more noticeable that if it was somewhere that can easily be covered with other hair. I can wear a ponytail and I am comfortable wearing hats so I can cover it. It already has new hair growing in that is about as long as a three day beard so I am hopeful that it will grow back and I am taking a wait and see approach. I am also considering a perm that would make my hair fuller and curlier and probably cover it.

[Amethyst]

5 hours ago, Arcadia said:

https://www.fda.gov/news-events/press-announcements/fda-approves-first-systemic-treatment-alopecia-areata
“Today, the U.S. Food and Drug Administration approved Olumiant (baricitinib) oral tablets to treat adult patients with severe alopecia areata, a disorder that often appears as patchy baldness and affects more than 300,000 people in the U.S. each year. Today’s action marks the first FDA approval of a systemic treatment (i.e. treats the entire body rather than a specific location) for alopecia areata.

….

The most common side effects associated with Olumiant include: upper respiratory tract infections, headache, acne, high cholesterol (hyperlipidemia), increase of an enzyme called creatinine phosphokinase,  urinary tract infection,  liver enzyme elevations, inflammation of hair follicles (folliculitis), fatigue, lower respiratory tract infections, nausea, genital yeast infections (Candida infections), anemia, low number of certain types of white blood cells (neutropenia), abdominal pain, shingles (herpes zoster) and weight increase.  

Olumiant is not recommended for use in combination with other JAK inhibitors, biologic immunomodulators, cyclosporine or other potent immunosuppressants. Olumiant comes with warnings and precautions including recommending close monitoring for the development of signs and symptoms of infection during and after treatment; evaluating patients for active tuberculosis infection and testing for latent tuberculosis prior to treatment with Olumiant; and the potential for viral reactivation. In addition, other warnings and precautions include hypersensitivity (allergic reactions), gastrointestinal perforations (tears in stomach or intestine), and laboratory abnormalities including low white and red blood cell counts, liver enzyme elevations and lipid elevations.”

thank you for this. My dh was just reading this aloud to my dd and me an hour or so ago. She does still only have the one bald patch, and it is starting to show some hair growth - yay! So I'm optimistic that she won't need baricitinib. Fingers crossed!