Replies to This Discussion

Permalink Reply by DeniseC on August 2, 2016 at 12:42pm

Hi

First of all - keep the humour going. I am sure this helps, and it sure beats sobbing into your pillow every night (not that I have been that bad, but there have been many nights where I have lain in the dark, anxiously trying to deny that the hair loss has got worse).

I, too, have had the itchy arms, and worse. About three years ago, or so, I developed a severe reaction to plastic shopping bags and supermarket baskets - bright red weals all over my arms, even if I am not in contact with them for long. I also get itchy feet and legs, especially on my shins, which, like you with your arms, I can shred. Nice.

And I, too, am with a Chinese medical doctor - acupuncture, cupping (bizarre) and herbs. No idea if it is helping with the FFA, but it has definitely made a difference to my hay fever (another allergy) and the itching.

I am not taking anything at all for the FFA, which started (I think - impossible to say really) some years ago, but was not diagnosed at all for a very long time. I went to my doctor as my eyebrows had disappeared, seemingly overnight, and was told, after blood tests, that it was my age. Thanks. At the time I didn't realised my hairline was ever-receding, and it took me a very long time to accept it was, as I so desperately did not want to believe I was turning into a balding old lady. Once it was diagnosed, I decided against medication, as the wonderful specialist who diagnosed me was pretty adamant about there not being much you can do, as the actual hair follicles are killed off. What he did do, though, was give me all sorts of goodies to help boost my immune system so progress of the FFA was halted. Touch wood, it seems to have been.

Since then, I have had an intralace system fitted (Lucinda Ellory Clinic, here in London, but also in NY and LA - very highly recommended) so feel much more 'normal' than I did. However, the more I look into this horrible condition, the more concerned I get, not about me, but about my daughter and granddaughter, and all the other women in the Western world. I don't know if sunscreens are to blame: certainly for me, there is, I believe, a very strong link between the FFA and the oral lichen planus I was diagnosed with about 15 years ago - and the relatively newly occuring allergies. However, it seems logical to me that chemicals could well be at the root of all of these symptoms.

I have never over-used sunscreen - when I was a child, we simply didn't use it at all (I suppose we just fried!), but as an adult I have religiously used moisturising cream on my face, and cream that contained SPF.

If there is a link - and research shows the distinct possibility that there is - then what are the implications for the next generation and the one after that - my daughter and granddaughter? They are so very careful to use sunscreen to avoid cancer. But are they placing themselves at risk of this? Not as bad as cancer, for sure, but still not good.

Who knows?

In the meantime, I carry on. Having the Intralace helps, but I still on occasion have a niggly worry about whether it will all flare up again, and the hair that remains on the top of my head will slide off into the ether.

As you say, enough already!

x

Permalink Reply by Lo on August 2, 2016 at 1:06pm

Hey, Denise! And welcome, Minter.  Agree that keeping a sense of humor about this is absolutely a must!  Hard to do some days - I know.  So Denise... question... You mentioned your derm put you on lots of goodies to help boost your immune system.  What kind of goodies?  I thought our immune system was actually "over" active... and needed to "calm down"?  This is so confusing to me... as my derm has put me on immune suppressants to actually suppress my immune system from going into "over-drive"... and I've been on them for over a year.  I still have the red "dots" at the base of my follicles along the top/front hairline... BTW, I just turned 45, not in menopause... and this started when I was 38.  I'm still able to wear my fringe/bangs to cover the loss... Pray I will for a while... but time will tell...

Permalink Reply by DeniseC on August 2, 2016 at 2:05pm

Hi

Well ..... what he said was that my immune system was 'all over the place'! The oral lichen planus I have/had is an auto immune problem; my sister has psoriatic arthritis - another autoimmune problem; my daughter has another condition, and so it continues through my family. All autoimmune conditions. And that, I understand is where your immune system goes bonkers and goes into attack even when it doesn't need to.

The 'boost' I was referring to was more about making my immune system stronger and less chaotic, so it does what it should do. The overall package stuff was to make my body more able to deal with the conditions I was showing symptoms of.

he wasn't a dermatolist - he is an integrated medical practitioner. Julian Kenyon from the Dove Clinic here in London - he uses traditional approaches, such as acupuncture, together with state-of-the-art diagnostic technology, and prescribed medication/drugs. The most important thing for me was that he looked at me as a whole person, not just a collection of symptoms, and treated me holistically.

So I had a range of natural products to boost (for example) my pancreas, as the diagnostic imaging process showed that wasn't working to best effect. And I was, for ages it seemed, on Immiflex, which is an immune booster, and a very good (according to him) krill oil to reduce inflammation.

Intuitively, I feel my body is out of kilter - that the lichen planus in my mouth and throat, the extreme problems I had with my gut (and was hospitalised for, to no avail, as they couldn't diagnose what was causing the problem), the highly sensitive arms and legs, the hay fever, and of course, the FFA are all symptoms of the one problem. Whether that is caused by chemicals, or chemicals interacting with hormones, I have no idea, but I believe absolutely that if I can make my body as strong as it can be, and as in balance as possible, I stand a much better chance of maintaining an equilibrium.

Denise

Permalink Reply by Lo on August 2, 2016 at 4:20pm

OMG was that well written... and spot on.  I, too, have suffered for SO many years with these ridiculous rashes on my forearms and shins... SOOOOO itchy.

I absolutely agree that our immune system, due to some environmental or hormonal or some other factor - is completely out of whack... not knowing what is "good" or "bad".  I actually take Krill Oil every day... and know of some women who are taking supplements that are supposed to "balance" the immune system so it isn't under or overactive...

Thanks for your response... wishing you well.

Permalink Reply by DeniseC on August 2, 2016 at 5:29pm

And you too. And here's to us all - to everyone who hates this stupid condition, but who continues to live life to the full!

Permalink Reply by Mel on August 2, 2016 at 1:28pm

I am not menopausal yet, at 51, however this is the first time I've heard someone mention itchy forearms. I have that, too!!! I thought of asking about it as a potentially common symptom, but it seemed so random. Weird and interesting that these things we notice are often not "nothing," if you know what I mean. It's another symptom.
Me be is especially itchy on the left forearm closest to the joint, but on top.

Permalink Reply by cubbieblue on August 2, 2016 at 2:46pm

Hi Minter, your story sounds like mine.  I never saw a lot of hair on my pillow and jokingly told family members that aliens were stealing my hair during the night.  I did find 7-8 strands on my hands when using mousse or gel.  Maybe I should have been more alarmed by that, and that I suddenly didn't need to shave my legs, but I was in menopause and hair loss is common during menopause according to my google searches.   I was able to keep the eyebrows for a long time but lost them after I had chemo for breast cancer. My hair grew back after chemo -- everything except the front and sides which was gone due to the FFA.  My FFA slowed during chemo but now has picked up steam again. 

I also started having itchy arms from sunscreen prior to diagnosis!  I wasn't sure if it was the sunscreen or the sun causing it.  Very Interesting.  Now I try to avoid the sun because I don't want to use sunscreen and have also stopped using facial products with any SPF.

I use the Clobetasol topical solution which is thinner than the cream or ointment, and much easier to apply.  Hope you can get the topical solution in the UK.

Good luck on your journey.

Cubbieblue

Permalink Reply by Minter on August 2, 2016 at 4:05pm

Wow what great replies!  cubbieblue, I'm sorry to hear about your cancer, I hope you are ok now.  Actually now that I think of it, I am the same as you, I never saw/see an unusual amount of hair loss, so I now wonder the same, where & when does it go? I also have the Clobetasol topical solution, it will be trial and error until I get a routine down with applying it I guess!

Sunscreen doesn't bother me anywhere else except on my forearms, though lately it has been irritating the back of my neck, which probably means I will lose the hair at the back of my head now too :-/    Same as you DeniceC, I never used sunscreen when I was younger but I use it religiously now, how ironic that something that is to protect us, may be causing all this pain and suffering :-(  But, I need to use it, I am very fair skinned and apparently these antibiotics that I am on now will make me super sensitive to the sun- so is it a risk of losing more hair or a risk of getting skin cancer or at the least nasty sunburns, sigh.

I got cupping in the past at the acupuncturist too, it is a strange thing, had to remember the cupping "marks" were there when thinking of wearing a tank top or something haha! I have my first visit on Thursday and I will report back with what she does/says about all of this.  I am looking forward to relief from this itching, I have now realized it is much worse in the summer with the heat. Mel, hopefully you will get relief from your itchy arms too, it is awful, isn't it, I don't know about you, but I would catch myself just absentmindedly standing around scratching away, not a good look!! :-(

Lo, I have the red "dots" at the hair follicles too, I also get something like hives I guess, right before my ears at my temples, I have been using tea tree oil to try and keep them at bay, but now I know that it is probably a warning that what little hair is at my temples is soon to be gone also.

I just switched to zinc oxide sunscreen, at least for my arms and face/neck to try and ease the irritation and it has helped.. I have been using Bare Minerals makeup for years now, some of their foundations have sunscreen, but I will try not apply that near my hairline from now on, just in case using sunscreen is part of the problem. I've also switched to handmade soaps and lotions/moisturizers a while back when all this itching started. 

 It is funny how all this stuff has been happening for so long, separately it was easy to write each thing off as, oh this is because of menopause, or, I was out in the sun too long, or it is a breakout, or I over plucked my eyebrows, or maybe I should switch shampoo, or, it is just aging this is what happens, or it is just a heat rash on my arms making me itch.  But put it all together and it is like, what the heck, how did all this get below my radar?!   It is so good that you guys share so much, it is hugely helpful, as you all know, there is just not that much information out there about this condition.  

Permalink Reply by Mel on August 2, 2016 at 4:32pm

Totally all!! It was so under the radar... Then I pulled out a pic of myself from years ago and realized things like the eyebrows. Hey, one tip, in case anyone gardens or is in the sun for long periods (like for cycling) is to wear white "arm coolers." They are for cyclists and sort of like arm warmers that you pull on to protect the arms, but they are white and help cool you down plus keep sun off of forearms. Just a thought. Thx for all the messages!

Permalink Reply by Minter on August 3, 2016 at 1:08pm

Mel, that is a great suggestion, to use the arm "coolers" I have seen them, but never thought of wearing them if I wasn't cycling!

Thank you Tinsel :-)

Bu, I also am thankful I found this group! There is nowhere else that I can share any of what I am going through with FFA, so I am so happy to be here.

For instance, this morning I was thinking, as I was getting ready to go out for the day, oh my hairline doesn't look that noticeable, then later I was walking into a building, there was slight breeze, there I am thinking what a pleasant day it is, when I catch sight of my reflection in the window, with my hair blowing back off my face, omg, is that how I look to the world! sigh :-(  

Actually I was going in there for a dentist appointment and she asked if I had any new medications and I told her about the antibiotics, she asked why was I taking them- so I told her, we were talking and she said, well this is a bad thing that is happening to you, but if this is the worse that ever does happen, then it really is not all that bad.  After thinking about it, I do agree, if this is the worse thing that happens to me in my life, even though right now it does seem like the worse thing that could ever happen, then it is not so bad.  

Yes, it is making me very self conscious, & as someone who already was/is super shy and self conscious, to have to deal with losing my hair, this is the stuff my worse nightmares are made of.  Yes, having to deal with all the symptoms, now that I know they are symptoms, the itchiness, the "painful hair", losing eyebrows, whatever is happening to my immune system is so hard. But when it is put in to perspective with say, cancer, or paralysis or death, I guess it is bearable.  As my son was saying, if I do lose all my hair, then I can get some really cool tattoos on my head.  humph.  out of the mouths of babes!!!

Permalink Reply by Minter on August 3, 2016 at 1:52pm

***After I signed off and started thinking about my post, I came back on as I wanted to add this, I don't mean or want anyone to think that I am trivializing FFA, I do not want anyone to think that and I apologize if anyone did feel that way.

 It is just that right now, for me, this is the best that I can do. The thought of losing my hair is so hard, but when my son makes a comment like he did, about the tattoos, it kind of puts it into perspective, I don't know, starting to ramble here, hope this all makes sense to someone!

Permalink Reply by CurlyK on August 3, 2016 at 9:30pm

Bless you all dear girlfriends! Though we are miles and continents apart, I feel I have soul sisters in this forum. No one understands what I'm going through like each of you and I'm grateful and blessed to have found you.

I read this thread with my heading bobbing up and down at the similarities. Hysterectomy 8 years ago, notice of hair receding 3 years ago, try everything OTC out there thinking it was just menopause. No eyebrows, no hair on legs, itchy skin (but that mostly happens in the winter months for me), funky rashes on my thighs or arms that flare up now and then. Finally found a HT/PRP doc who suggested FFA about 5 weeks ago. Scalp biopsy confirmed it last Friday. And now waiting to find out what other autoimmune 'thing' I may have after more blood work.

I've chosen not to use clobetasol or steroid shots (allergic to steroids), etc. mostly because everything I've read from those who have used these things have had minimal to no results. After 3 years of slow and steady hair loss, I think the shedding has tapered off but it's at the point where I'm getting a topper since the stress of being self conscious constantly has become too much.

As I've slowly 'come out of the closet' with family and close friends, I did have someone say 'well at least its not life threatening'. While this is so true and for that I am grateful, I don't want to diminish my (and all of your) deep emotional distress over this. I have lost so much joy and energy because of the distress and frustration and even anger at feeling betrayed by my own body. I don't feel beautiful and sexy for my husband (although he says otherwise and is wonderful to me through all this). I miss my head full of curls...

Thank you for letting me share - it helps getting things off my chest to ladies who completely understand without judgment.

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