Replies to This Discussion

Permalink Reply by LVL on April 7, 2017 at 11:22am

Hi Dragon & Fox. I experienced a small burning/throbbing pain on my hairline a week ago for a few days where it is receding the worst. I also read that means that the follicles are scarring over. I've read that FFA can be itchy and painful. I understand where you're coming from. It's very scary and stressful. I'm only 33. Not that it matters what age you are when you lose your hair. It's heartbreaking at any age. Hopefully your doctor can find something to help with his study

Permalink Reply by DragonandFox on April 7, 2017 at 3:19pm

Thanks for responding LVL.  I'm 54 yrs old, but I've always been a youthful 54 and I tell you I did not realize HOW much HAIR contributes to that!  At this point, odd as it is, I do believe HAIR is #1 in the youthful appearance factor.  Then personal style, then wrinkles, then thin vs over weight.  That's just my personal humble opinion about the power of appearance in life.  Certainly character is #1 for everything.   Something about hair & particularly its fullness and flow makes creates an illusion i personally want to keep.  I'm sorry you're dealing with this at such a young age LVL!  It's not fair!!  Honestly, it's just not.  It's not about how much, "it could be worse" it's about where you're at this moment. I know we can all get through this, but it can be demoralizing and actually painful.

I'm keeping the hope that they find some new solution sooner than alter!

Permalink Reply by Minter on April 8, 2017 at 3:46am

That burning feeling must've had something to do with the acupuncture? That could not have been pleasant at all to deal with Dragon&Fox, it sounds just awful.  I do agree with you about hair keeping one looking good, sigh, never knew what I had when I had it.  

What kind of study is your doctor in NYC doing? If she needs subjects I am willing! 

LVL,  I too am sorry you have this at such a young age, this is not a group that you want to join, ever- especially when you are young.

 

I don't think I've ever gotten any real "burning" sensation?  or pain?  I do have the itching though, mostly on my crown and the back & side of my hairline and only once in a while on the front/top of my hairline- also I am not using anything at all now, no prescriptions, steroids, clobetasol, just tea tree oil on my front hairline.  Though I have noticed lately that the skin on my forehead closer to my hairline is now very thin looking- now I am wondering if using the clobetasol and getting the steroid shots has made that happen or is it just age- either way I am glad I stopped using that stuff!

Permalink Reply by DragonandFox on April 8, 2017 at 9:43pm

I agree Minter, I knew what I had, but never really thought I'd EVER not have it!  I take mostly after my paternal grandmother who had a full head of lush white hair when she died at 90. My maternal grandmother's hair however thinned to nearly nothing by the time she was 70. she lived to 88 though.

So, it wasn't the acupuncture after all, but it must have been from an herb she gave me to try for another issue I have. I took it, then had that burning pain, then she told me not to take another pill and it went away without returning.  It was horrible! scary! 

Clobetasol has been one of the keys to preventing extreme inflammation.  I mean, so just yesterday I saw that since stopping the Clobetasol lotion on the hairline....OMG!  It's difficult to even write this, the skin is like, bubbling and white, like a burn, or a scab, "scarring!"  I am seeing WHY it's called "scarring alopecia!"  I also see some mild pitting on the temples.  So, I am NOT going to return to putting the lotion on my temples however, I started this morning putting it back into the hairline where that weird scarring is starting!  FFS!  I started crying before going to work.  I can't recall experiencing this so badly before.  I used to go to a different acupuncture place, a school actually and in some ways it might have been better because I think they dealt with the inflammation more productively.  I don't know!  I can't go back there, I burnt that bridge (long story.)

Anyway, Minter, I'm sure the thinned skin you speak about is from the Clobetasol and injections! No doubt!  Mine is so bad before stopping I was getting small and quite large blood vessel breaks; so under my bangs were blood marks from broken vessels. One would clear up and another would break; which is why my Dr told me to stop, but then.....the scarring has started so....I have to maneuver the lotion and decide which one is the lesser evil!

Until they find something!!  A better treatment or even a miracle...a Cure!!

You can call my Dr and speak to her office if you want.  It's Dr Lindsey Bordone with Columbia University Doctors in NYC.  I'll certainly create a thread here when they finally call me in!!  I know she see's a TON of FFA patients!  If you live in the vicinity, even a few hours away, I recommend seeing her.  I can't recall the name of the person who is leading the study with her, but, she talks about how much this other woman knows about our disease and she seems convinced they're going to be able to help us!!

I'm not a praying person, but, I am seriously hoping, praying, wishing, whatever!

I'm afraid to put tea Tree oil on, afraid it will burn and irritate.  PLEASE keep me informed in the next few weeks about what happens with that treatment Minter!

thanks

ttys

Permalink Reply by Minter on April 9, 2017 at 4:39am

Oh my gosh you have been through the wars Dragon&Fox!  That scarring does not sound good at all, there must be something other then clobetasol that your doctor can prescribe to sooth your skin?

As for me, I find the  tea tree oil doesn't really burn at all, it is not like if you put peroxide on a wound or something like that where it does burn, oww!  sometimes I blend it with coconut oil at night and massage it into my hairline/scalp- it feels and smells really good!  

Thanks for the info about your doctor, looking forward to hearing more about the study, though to be honest- unless it is an absolute guaranteed cure and it would also grow my hair back ;-D I can't see myself ever, ever taking prescription meds or going down the steroid road for this FFA ever again.  

Permalink Reply by sallylwess on April 29, 2017 at 6:44pm

You are so right about hair being an important factor in giving a youthful appearance.  I am 72 years old.  Up until a few years ago I was not believed when I told people my age.  I don't think it is just the loss of hair that ages with FFA.  The skin, or at least mine, is affected.  I have not wrinkles, but I have facial papules which have developed in the last few years.  I also think that even when you add "helper hair" it does not in many cases give the same look and it tends to make one less sure of their true identity.  That has been my experience.

Permalink Reply by AnnieMay on April 26, 2017 at 2:41pm

I am still very new to FAA and my scalp has a burning sensation and is red in some spots. My dr prescribed a steroid lotion (Betamethasone Dipropionate lotion) and I've been using it for almost 3 weeks but I don't know if I should stop. Being new to this I don't know if the burning feeling is from the lotion or FAA? And maybe I'm just more aware but it seems like the white areas along my hairline are more shiny? I see my dr again in a couple of weeks. I don't know. Just feeling overwhelmed by this

Permalink Reply by DragonandFox on April 27, 2017 at 4:49pm

hi AnnieMay,

I completely understand feeling overwhelmed by it all!  Particularly it being new for you. I know we all feel your confusion, frustration, pain and fears!  The only thing is to keep close in touch with everyone here, keep posting comments and responses and most importantly, trust your Dr.  depending on where you are in the world, if you feel your Doctor is not understanding what's happening, find another one, if you can.  There are a handful who specialize in this particular disease, but, even they don't have the answers.  it's a lot of trial and error.  I find acupuncture does help but I'm on my 3rd acupuncturist as of yesterday.  When the others worked it was great, when they didn't it was, well....burning scalp.

good luck!  ttys

e

Permalink Reply by sallylwess on April 29, 2017 at 6:47pm

So, is your scalp better?  Did it stop burning.  I've thought of doing acupuncture. Do you still think the scalp burning was from the acupuncture?  I can only use clobetasol solution because the other makes me break out in rashes.

Permalink Reply by DragonandFox on April 30, 2017 at 5:02pm

I also can only use the Clobetasol Sally.  yes, my scalp stopped burning by the late morning (after it started that night.). As I think I said, I had to use cool compresses.  I sent a text to the acupuncturist and she said she was convinced it was an herbal tablet she gave me. I think the tablet was for stress.  I used to have no problem with herbs but I find I have a ton of issues now a days. Not sure why.  Along with the FFA, I have a number of other issues being addressed.  In any case, I was inclined to agree with her because that burning never happened before and I did take a tablet that day and never again did it happen, even with acupuncture.

I have pain, soreness, itching and most certainly the FFA scalp gets red & inflamed!  After applying the Clobetasol directly to my temples (as well as IN the hairline) the skin thinned out and I was getting this horrible broken  blood vessel marks that looked like I was bleeding under the skin, which I guess I was.  I thought it would help regrow hair, but, it did that! I stopped applying it to skin and it appears the skin is thickening again. I d put the Clobetasol in the hairline still though because I HAD to or the hairline was going to be a horror show!  It started "scarring!"

Acupuncture sessions are helpful for sure!  I changed acupuncturists last week, (again.). This is because it has not been an easy task to find an acupuncturist who understands the complexity of this disease and my issues, who I can afford.

I explained my issues to the current person and she was extremely sympathetic and understood the need for someone willing to provide treatment for such a complex case as well as for an affordable price so she is doing just that!

My 1st session with her was relaxing and I slept like a baby that night.  So far, things are good, my scalp is not red and inflamed.  We'll take it slow and hopefully she can help with some of the other concerns too.

But YES, I would mot certainly suggest acupuncture!  Just be ready to tell it all and if after 3 months things are not better seek another practitioner and explain the issues.