Alopecia World
www.alopeciaworld.com
Newly diagnosed at 31 years old
Hi, I've been a longtime lurker, but this is my first post. The discussions here have been incredibly helpful so far, so thanks to all! Unfortunately, I've been diagnosed with LPP and/or FFA at the young age of 31. I believe that I first noticed my pink inflamed scalp around 1.5 years ago. It first occurred during a period of very extreme chronic stress, perhaps the worst time of my life -- so I believe that it was triggered by emotional stress.
So far, I have only lost a small patch of baby hairs at the front of my hairline (approximately 0.5-1 cm deep, 1-1.5 inches wide) -- I noticed the loss only because the baby hairs at the very front of the hairline have remained intact, so I have a weird little bald patch. My 'actual' hairline where my long hairs begin is still intact. The patch is sometimes pink, and the hairs along the margin have a bit of perifollicular redness, but there's no pain or itching. Fortunately (I suppose), I have not lost any eyebrow hair or body hair, and the rest of my hairline is unchanged. Right now, I can hide the patch by parting my hair to the side.
My original dermatologist diagnosed scarring alopecia (LPP) but didn't distinguish between LPP and FFA. I subsequently saw a hair specialist who diagnosed FFA based on the location of the loss and the clinical presentation, all without biopsy. The hair specialist derm put me on a low dose of CellCept (250mg twice daily), along with steroid injections and clobetasol/tacrolimus topicals. I've been using the LaserComb 3x/week, and I am starting a series of Excimer laser treatments next week. I also started using Latisse on my eyebrows and eyelashes as a preventive measure.
A few questions for you guys:
(1) I know that many FFA patients take some sort of anti-androgen (finasteride, etc.), which seems to be a decently successful treatment. Since most women with FFA are post-menopausal, I was worried that I had some sort of hormonal imbalance given my age, so I did an extensive hormonal panel -- aside from high SHBG, everything looked normal, and my testosterone (total and free) were on the low end of normal. For those on anti-androgens, did any of you actually have elevated testosterone or DHEA? I would probably not go on finasteride given my age, but I might try spironolactone if there's a potential benefit.
(2) Have any of you tried platelet rich plasma (PRP) therapy? My derm mentioned it to me -- he said that there is a very, very slim chance that it would help with regrowth, but that it might help to halt any further loss if other treatments don't seem to be helping. He did have a patient with CCCA who requested the treatment and had complete regrowth, but I am not holding my breath. He'd give me a discount, and I'm in a fortunate situation where the cost wouldn't be a deterrent.
(3) Aside from medical treatments, what other lifestyle changes have you made? Supplement-wise, I'm taking Viviscal, iron, vit C, vit D, zinc, methylfolate, krill oil, ubiquinol, and turmeric. I've been eating a strict autoimmune paleo diet, I exercise regularly, and I meditate and go to restorative yoga classes.
(4) Are there any questions that any of YOU have about the current state of the medical research on FFA? I am a PhD biomedical researcher, so I have full access to all journal articles, and I can provide summaries/interpretations for anyone who is interested. I will say that I've done an extensive PubMed review, and having looked at the body of research, I am not impressed with the quality...
Sorry for the long post! I was quite depressed about the diagnosis at first, but I've already made a ton of positive life changes -- so maybe it's a blessing in disguise.
Last thing (I promise), I've read several posts that have mentioned that celebrities don't seem to get it. I don't think that is true -- they might just be better at hiding it! For example, former Fly Girl Marie Todd posted about her FFA (http://www.marietodd.com/blog/), and Grace Coddington (creative director at Vogue -- https://en.wikipedia.org/wiki/Grace_Coddington) likely has FFA, but it doesn't seem to bother her one bit.
Replies to This Discussion
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Permalink Reply by ammie on
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Sorry you are dealing with disease but I am glad it was caught early. You're in a good place to try to stop it from spreading and losing more hair.
I am 40 and was diagnosed, at 39. I had a baby at 38 and have always had normal periods, and I still get my period.
My testosterone levels are all within the normal range. I have a small bald patch at the front of my scalp, have thinning at my temples and have lost much of my sideburns. I can still hide the hair loss but I can't wear a ponytail without bringing some hairs down to frame my face.
I'm taking plaquenil and finasteride and using Rogaine, and topical ointment, tacrolimus. I have never had redness or itching on my scalp but I've had really flaky skin like super bad dandruff that has gone away since I started the meds.
I do yoga and that helps with stress. I'm also trying to eat healthier, walk more and lose weight. If I'm going to be bald, I want to be fit at least.
If you plan to have children, you should not start finasteride. It can cause a serious birth defect in male babies. I don't plan to have any more children so I decided to take it.
It's funny you mention celebrities. I was looking at pictures of Tori Amos the other day and I think she might have it. I don't know for sure but her hairline has shifted back.
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Permalink Reply by Minter on
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I am also sorry that you have FFA, especially that you are so young, but it is good that you have found this group- it is full of information and support! As ammie said, it is good that you have caught it early and you are doing all the right things to take care of yourself :-)
I was diagnosed a little over a month ago, I was taking Minocyclene, but it made me feel horrible and slightly crazed! So stopped using that and am now just using Clobesterol once a day as prescribed and I go to the derm next week for a follow up where I will probably be prescriped Plaquenil. I will get the full results of my bloodwork next week, but as far as I know, my testosterone levels are fine.
Thank you for sharing Marie Todd's blog, I read it and wow, I love her outlook!
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Hi Owlie, I have also been a lurker on this site for a little while. I appreciate all of the activity of late and decided it was time to comment. I am 39 years old and was diagnosed with FFA two years ago. I first noticed a small bald patch, about the size of a dime, smack in the point of my widows peak. It's like one day my hair was there and the next it was gone. I really freaked out, spent way too much time on the internet causing myself massive anxiety. It was a few months before I decided to go to a dermatologist. She said it was FFA, no biopsy, prescribed me Clobetasol and sent me on my way with a 3 month follow-up. In the mean time I went to my GP and had every blood test known to woman, went to an endocrinologist who did the same, and saw my gyno. The only thing I was able to find out is that I have Hashimotos, which is basically pre-hypo thyroid but does not cause hair loss, and high cholesterol. I am not on any medication for the hair loss, just the Clobetasol. No one has suggested that I try anything and I am hesitant to take anything, anyway. I have been taking just a multi vitamin and biotin.
Right now I am missing about 2 1/2 inches, length wise, along my hairline and at the middle point it extends about 1 inch back, but tapers to the sides. I have also lost about a quarter size patch from one side burn. No loss on the back hairline. So far I can cover it with my "comb over". I have long straight hair and I can just swoop it over my forehead. However, the loss is creeping towards my part line and I don't know what I will do when it gets there. I am constantly thinking about it, which probably doesn't help. The anxiety this condition creates in me is awful.
I believe that this is hormonal. Looking back, I think it was a change in the brand of my birth control pill that started me down this path. I had been taking the same brand name for several years, but one day my pharmacy changed me to generic. It was almost exactly three months later that I first noticed the hair loss, which I think caused a disruption or something in the growth cycle and put my hair in the telogen phase. Maybe I'm grasping at straws, but the pill is the only thing in my life that changed. Now getting my doctors to agree is another story...they all give me a "that's possible, I suppose" reply. My gyno did finally suggest that I switch to a non-hormonal BC or stop altogether, but I have to be honest...I am pretty paranoid about stopping the pill as I could end up losing even more hair.
I did find a new dermatologist who specializes in hair loss. He does PRP therapy and I decided to go for it. I have had one session and go back later this month for round two. They do three rounds, about 6 to 8 weeks apart. Not a pleasant experience at all, BTW. It is not likely to grow any hair back, but he is hoping it will stop the progression. He did give me a discount price, which was nice...maybe he felt sorry for me due to my age. Fingers crossed that this helps.
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Hi Gracie T & welcome, it is sad to have to join this group, but it is a great group for this condition! It is so frustrating not knowing the WHY & HOW of why & how FFA occurs in some people and not in others. It really does seem, at least it is to me also, that it happens over night! One day the hair is there and the next day, it isn't. This is such a frustrating disease, the not knowing of what causes it.
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Permalink Reply by CurlyK on
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I met with a prominent PRP specialist in Sarasota who was very upfront with me that PRP will not work for my FFA. He also said hair transplants would not work as the hair would eventually fall out. I am on my way right now to get my semi-permanent hair piece installed. I have decided not to take any prescribed medications as I just don't see much positive results on here. I have chosen to change to an autoimmune diet, and take turmeric and other supplements. I feel better overall just having made the changes. Like you it was hard for me to accept my diagnosis at first but there was also some relief to have an answer to my issue. It took them pressure off me to try to fix it or hide it.
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Owlie, I too was diagnosed at a young age. I'm 33 and was diagnosed at 29, but had symptoms for about a year prior. I was also going through an extreme time of stress, grad school and working full time. I lost the most hair in the first year and a half and now, almost five years later I've lost about an 1.5 inches on the sides by my temples and 1 cm in the front. My eyebrows are very spars, but I had them tattooed on a month ago, which was the best decision I ever made!
Since I was diagnosed I have been pregnant/nursing twice and during those time periods my FFA was quiet; no redness, itching, flaking, etc. Right now I am 5 months postpartum and symptoms are starting to come back. I've never had my hormones tested, but would like to now that I'm done having kids and am hopefully getting back to my "normal" levels.
Since diagnosis I have had steroid injections, used clobetosol foam and have taken prednisone, paquinel, actos and spironolactone. Currently I am using clobetosol foam every other day and just started back on spironolactone. I'm actually taking the spiro for acne and was on it prior to diagnosis, so I don't think it's helped with the hair loss. I'm going to see my dermatologist next month and plan on discussing finasteride. She would not prescribe it until I was done having kids, which I am now, so we'll see what she says.
Aside from medical treatments, I'm back in the gym with the hopes of getting back into pre-baby shape and to keep the stress at bay. I'm taking a multi vitamin, biotin and fish oil. I've wanted to try others, but haven't since I was pregnant. How did you go about choosing the supplements you are on?
Good luck to you and thank you for sharing the celebrity posts.
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MnM, i'm 36, diagnosed 2 1/2 years ago
My 3rd Child is 5 weeks old & during pregnancy my FFA was more or less quiet. My skin become "normal" & I really hoped that maybe my FFA had burn out
But now my skin looks bad & my hairline is all red again. I'm nursing so I cant take any drugs
But why did pregnancy stop the hair loss???
If we only knew the causes of FFA...
greetings from Switzerland -
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Hi Charlotte, congrats on baby #3! My only guess as to why FFA is quiet during pregnancy is because your immune system is suppressed so you don't reject the baby. If that's true, and FFA is an autoimmune condition it seems to make sense. I'm no expert, but that's the conclusion I've drawn after two pregnancies. I'm thinking there has to be a hormonal link as well. It's so frustrating, something I wish we didn't have to worry about while caring for newborns.
Greetings from the US! -
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Thank you for your replay!! (It took me some time, sorry!)
Hope you and your family is doing fine!
If Pregnancy is a solution, we should have many Kids;-) unfortunately no option for me...
I'm still nursing, so I have to wait for treatment
Wish you all the best! -
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I've had 2 sets of steroid injections in the last couple of months, but no soft spots, yet. I've read that the steroids can sometimes cause "dents" . Has the derm said whether it will clear up on it's own or will your soft spots always be there?
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Permalink Reply by Ana_Brazil on
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Hi, I am Ana from Brazil, and I found out I had FFA last year, but it started 10 years ago. I can tell because it was then when I got divorced and it was the most stressful time in my life, and the first thing I remember is someone telling me to pencil my eye brown, and I thought, why?, my eye brown are not great, but fine the way they are. Well it wasn't!
I do believe this condition, as any other condition, is related to our emotions, and some doctors don't like to go there. And off course our emotions affects our Imune system.
The last doctor I went to see, it is considered the expert here in Brazil. Our consultation lasted almost 3 hours. The bottom line is that it is consider a new disease, 20 years old, and they don't really know the cause, the medication might help stop, or it stops by itself. I knew all of this by reading medical materials on the Internet.
She is in agreement with the English doctor and his theory with the Sunblocks (I don't). They believe one had an allergic reaction the a component in the sunscreen and the imune system attacked that component and the same component is present in the bulb of the hair. Therefore the imune systems is attacking the follicle causing the hair to fall. The sunscreen theory was mentioned at the 2016 CARFConference and someone mentioned in this blog.
What I explain to my doctor is that I only had a noticeable allergy with Neutrogena, and it was ONCE and never used again, and it was more than 20 years ago. So, to me it does not feel it is the cause of FFA.
What I did mentioned to her is that during my "divorce" that lasted 1 year to separating, and very stressful 2 years after that trying to figure things out. It was when I really notice my hair falling, but I had more important things in my head, and did not care.
I also started using a lot of products on my skin, to make me look "better" (acids, etc), I also started using sunscreen, which I rarely used, because of these products, and I also started to do a lot of things to my hair, to make it also look "prettier", and this is when I started loosing my eye brown, hair and body hair. So a combination of stress, very low imune system, variety of products is the scenario I see for my hair loss.
I have all the symptoms mentioned at the conference for FFA: lost of body hair, including in the pubic area, redness on facial skin that is often diagnosed as Rosacea, bumps on forehead, skin discoloration near scalp, rope-like veins at temples. These symptoms come and goes.
I am going to see and discuss my treatment with a doctor specialist in hair loss next month in San Francisco.
I am currently taking the same as Ammie:
Plaquenil and finasteride (I just started)
Rogaine foam to make the hair ticker, it seems that fine hair are the most susceptible
I will ad tulameric to my diet
I changed my diet: no gluten, no sugar, I only eat fish protein
I also started to exercising more, but doing things I love: I joined a canoeing team, doing Stand up paddle, started yoga, I am going back to dancing. I think it is a condition that makes us think of ourselves and focus on a life that we want to have, because this is life!
Loosing hair takes maturity (like Grace Coddington), and I am grateful it gave me the opportunity to know about this world. I hope to grow stronger about who I am, and not about what I look like. Our body is mortal, but our soul lives and grows forever...
Love,
Ana
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Hi Ana,
Just want to say I loved reading your post, I was smiling at the end when you said we need to focus on ourselves and have a life we want to live, beautiful words!
I also have almost all of the same symptoms as you, but mine didn't start from stress, it just started and I don't know why.
If I was more computer proficient I would start a symptom checker here, so many different, but yet the same symptoms shared by all of us!
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