Replies to This Discussion

Permalink Reply by Leigh on May 18, 2017 at 8:26am

Hi illustr8r and Airam - thank you for your kindness and the replies.  In spite of reminding myself daily I don't have a terminal illness for which I should be utterly grateful, this early process of coming to terms with this condition is awful, as I know it's been for everyone else.

I had scheduled a skin cancer check some time ago which I had yesterday, and the dermatologist I saw (not a hair loss specialist) said about FFA, "your emotional reaction to this is completely normal.  There are far more tears shed in this office over hair loss than when patients are told they have a malignant melanoma."  So, I'm trying to get used to the fact I may eventually be wearing a wig as my bald patches near my ears are growing larger. 

Illustr8r4, are you doing anything else besides the lotion?  Have you tried the scalp injections?  Any feedback would be greatly appreciated as I am strongly considering this, given the specialist seems so confident it would help me keep the hair I have left. He says he even gives his mother the injections.

Do you use a milder product for color and highlighting?  I never had a major problem with itching and burning, just noticed that I had a mildly red scalp rash near my ears and around my hairline for some time now.  I thought it was irritation from touching up my roots!  My hairstylist never remarked on it.

I hope your project goes well.  Thank you again very much for writing.  Warmest regards,  :-) 

Permalink Reply by illustr8r on May 18, 2017 at 1:01pm

I'm so glad that you wrote about what your dermatologist said about your emotional reaction. I have cried, uncontrollable tears, more about this diagnosis than when I was told I had stage 3 chronic kidney disease. With the kidneys, I could hide my illness. I don't look sick. This stupid disease? No. First, it took my eyebrows and I adapted by getting them microbladed, now it's going after the hair on my head. Hiding that is much harder and twice as frustrating.

Right now, I am only using Clobetasol. Scalp injections have been offered and I may do that eventually.  The feeling as if I have a headband around my forehead has gone away since I started the Clobetasol. I only use it at night.

I opted to not take Plaquenil because my kidneys couldn't clear the meds properly. It helps some ladies but I have read many posts that it didn't help too. I wasn't going to risk my vision for something that might not work. Besides, I wasn't even able to take the full dosage.

My hormones crashed (went from perimenopausal to completely and totally finished with menopause) and a B12 deficiency. I think that triggered this. My system is a delicate balance because of my bad kidneys. Now that I am on HRT, B12 shots I feel much better. That could be helping my scalp/hair too. I have new growth along my temples and even at my widows peak. Knock wood, I don't want to jinx it!

I use Cortisone 10 on my forehead and across my eyebrows. I have new eyebrow hair coming in. I don't know if they will bounce back fully but it helps the illusion. I read somewhere that 2.5% Hydocortizone will help eyebrow growth. I may ask my Derm about that when I go in for a follow up. I also put Castor Oil on them at night and on my scalp when it's itchy.

I take 500mg of Turmeric.

My hairstylist doesn't think fully coloring my hair is a good idea since my scalp is sensitive because of the Clobetasol and the disease. So, we just do 2 different foils. I have gone lighter in color and use my gray as part of the mix. Lighter hair is better to me because the contrast between my skin and thinning hair is less.

I have all of CarolJ's AIP Diets links bookmarked and plan to tackle that diet sometime next month. Have edited my diet already because of the kidneys so I can do more. I bough the book, "A Simple Guide to the Paleo AutoImmune Protocol by Eileen Laird" and it was a great and easy read on how to get started.

I am so happy to have found this website and group. Good days and bad days it's nice to know I can commiserate with other ladies who have this stupid disease.

Hang in there! Keep us posted if you decide to do the scalp injections. I haven't ruled them out. I'm just exhausted from doctor's visits and tests!

Best wishes! :)

Permalink Reply by Leigh on May 20, 2017 at 10:01am

I'm so sorry to hear you're dealing with kidney disease in addition to FFA.  And, what a rotten hand to have been vaulted right into post menopause.  I agree, it seems very likely that the stress and extreme hormonal change may have  exacerbated the FFA.  But I'm happy to hear the B12 and HRT is helping, and how encouraging that you're experiencing some new hair growth!  As you say, knock on wood.  :-) 

The tears and depression for me are ongoing.   Nature didn't gift me with great bone structure or any remarkable attractiveness but was very generous with my hair, and I've had a ton of it, until now.  I took it for granted.  As you say, this can't be hidden and who wants to "look" sick?"  The worst part is not knowing how bad this condition is going to become  - how much will I lose, and how fast?  How soon will I need a wig?   Thinking back I'm beginning to realize this condition must have ongoing for at least the past two or three years, or even more.   

I so appreciate you sharing your story and all you're doing to combat this.  I'm also highly uncomfortable with what I've read about the side effects of any systemic drugs to treat FFA.  (I read about the possible vision loss, too.  Scary)  Right now I'm in a holding pattern waiting to see derm #1 again in a few weeks, and have another appointment for a 2nd opinion to pick that Dr.'s brain about his success rates with the steroid shots.  As I'd mentioned, my eyebrows started thinning years ago, but all my searches came up with that condition as age related.  Not much of my brows remain, but I fill in with a good brow powder.  (I can't understand why they don't make waterproof products!)  I've looked at pics of microblading for the brows and the results are impressive.  It's nice to know that's an option.

Anyway, thanks again so much again for all the information.  This is absolutely a wonderful site and very comforting to swap stories about dealing this.  Best wishes, too.  :-)

Permalink Reply by Jo on May 31, 2017 at 1:06am

Hi everyone, am I so happy to have found you all. I am 53 and started noticing hair loss around my temples, eyebrows and arms about a year and a half ago. I think it had already started before that but when my mom was diagnosed with terminal cancer is when I really noticed and started seeking treatment. After waiting 6 months to get into a dermatologist, she easily diagnosed alopecia. She started me on the hydro cortisone injections, rogaine 2x daily and cortisone lotion once a day. It seemed to keep it at bay but sadly it doesn't seem to be working. Oddly, she never once said FFA, and just two weeks ago a friend with alopecia, who wears beautiful wigs, told me about FFA. I know that is what I have. I match the pics and my symptoms are text book. I have barely been able to hold it together. I have shed more tears over this than I can remember crying about anything. I have already done the naturopath, ayurvedic (quite frankly I eat healthy but am not willing to not eat garlic and tomatoes etc, I feel stripped enough by this damn disease and am not taking away that pleasure)poultices, shampoos, vitamins etc. For me now, although my grief is deep and feels like it is from my soul..(and be damned to those who tell me "at least you don't have cancer", I know I will get to acceptance and start to have fun with this. I am tired of being a slave to my hair and this disease, so almost at decision to shave it, and getting a Freedom wig I have read so much about. I know I will get to a point where I will be grateful for the ease in care, and truly believe I will look "prettier" cause quite frankly my hair is fine but was never great. I also had my eyebrows done, and my eyebrows were always lovely but these truly are better, love love love microblading. My head feels lumpy so not sure I can rock bald, but may get an elegant tattoo, if I will ever be courageous enough to go without wig. Right now I am grateful I have nice ears. I am looking for humour anywhere I can, and know that one day I will enjoy doing some wig pranks. Maybe after a couple dates show up bald, hahaha that makes me laugh outloud. Thank you all for sharing your stories and treatments, so nice to know we are not alone. Much love.

Permalink Reply by Airam-FFA on June 2, 2017 at 4:45am

Hi Jo

I feel for you and know what you mean about the tears, the lows and also trying to find the positives and humour.

My forehead is so high now - shame we don't live in the times of the Borgias, when they considered a high forehead to be a sign of beauty :) I have not reached the wig stage - as yet - and am looking at being 'creative' with scarves etc.

Stay positive.

Big hugs
xOx

Permalink Reply by Camille on June 2, 2017 at 6:30pm

Hi Jo, I'm new to this but have been losing eyebrows for a long time and have only a few on the left. What is microblading and who does it? I live near Portland, Or.
I too, am very emotional about this disease. Even though my other autoimmune diseases are painful and have caused a lot of loses for me, this one really is hard. After reading what the AID requires it just seems like too much at this time. I chuckle about your nice ears. Hadn't thought of them but mine are too so there's a positive. Lol

Permalink Reply by AnnieMay on June 2, 2017 at 9:43pm

Hi Jo

I'm still pretty new to all of this so I totally understand how you're feeling. I don't think anyone truly understands this unless you are going through it yourself? I wake up with anxiety everyday so unsure of what the future holds especially because it's affecting my skin as well. Really? It's enough for me to get this diagnosis but to see my skin changing as well? It's devastating and not fair. This has taken the wind out of my sails like nothing else. 

And Camille  I live in Portland and I have an appt to get microblading on my eyebrows. Their reviews are amazing but it takes a long time to get and appt so look at their website!

http://www.spadesbeauty.com

Permalink Reply by Camille on June 1, 2017 at 11:08pm

Hi Leigh, I had the scalp injections and they were very painful. Then I got an allergic reaction on my head and chest so my dermatologist thinks we should pass on them. Whew!!.This AIP diet sounds like it may be worth a try.
Hang in there everyone!

Permalink Reply by Camille on June 2, 2017 at 11:20pm

To Annie May, Thanks. I'll check out their website. So glad to know there's someone that does it in Portland. Good luck with your procedure!

Permalink Reply by Jo on June 3, 2017 at 7:39am

Hi everyone, thank you for your replies.  It sure does feel good knowing I am not alone.  Microblading, do it, do it, do it.  Just make sure you go to a reputable person so you don't end up doing the Groucho thing. Did you know there are some actresses that used to SHAVE their hairlines, to give them that lovely big forehead look?  So I go back to the dermatologist yesterday and tell her what I suspect I have, oh yes, she says.  Frustrated she didn't tell me this 8 months ago and could have started me on some oral meds then.  May have prevented the loss I have inches up my hairline on the left and right side of my head, and of course around sides and front, just not so far back.  I been stressing my lumpy head and now realize it has been the cortisone that has "thinned" the skin.  REALLY??? Not fair, dashing the hope of that lovely round shaved head I was starting to imagine I may eventually have.  Seriously, I am so tired of this controlling my life, it has ravaged my self-confidence, and like you AnnieMay waking up fearful.  I dread washing and combing my hair, I dread changing my bedding...all the hair I find.  I am truly taking my power back.  One crazy little discovery I made, this may help someone, now don't laugh..hot rollers.  Yep, my hoarder neighbour insisted on me going to Value Village and picking up a set, which I did $6.99.  I am blown away at the body my hair has and completely able to hide the hair loss. It has given me some reprieve.  Oddly I have so accepted the possibility of a new awesome wig (that you can even swim in) that I was a bit disappointed as I have been already seeing myself in the Dolly and Cher category.  Gonna be a diva if this is where this may go.  My tears are starting to fade, yipee, I am starting to be my effervescent self again, I can feel me coming back. I have also booked an appointment with an "extentionist" who specializes in hair loss. I have been nervous as I am worried it will pull out my fragile hair but will go for consult to see.  Scared to know what this will cost, I have spend a small fortune on this already.  I heard a quote I loved, "If you are are going through hell, just keep on going".  So I am doing just that.  Hoping I am through the worst of it (the shock, the tears, the grief, I bet we could fit the Elizabeth Kubler Ross grief model).  It truly is a roller coaster but working daily to take my power back. ;o) 

Permalink Reply by Minter on June 3, 2017 at 8:36am

Jo, I smiled as I was reading your post- I love how you are taking over FFA and not letting it take you over!  I agree with the cost of this stupid disease for "new hair" I have been going back and forth about doing the intralace system at Lucinda Ellery's and the cost is what is holding me back, it is scary, scary money (for me anyway) for the foreseeable future.  

But, in the meantime, I had forgotten I have a set of hot rollers myself, I think I will dust them off and give them a try again, haha I always felt very big haired and diva like when I used to roll my hair up in curlers ;-D

With your attitude you will get through this & good luck at the "extentionist"! 

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