Update from me

Hi everyone. Well, it's been a little while, thank you all for your supportive comments, and thank you Sally for your lovely blog post.

So - here's what is happening - I have been absent b/c we just moved, and I am living in two towns (my work is still in the old town). My hair - I had told you that it was coming back with Minoxidil and a cortisone cream. It turns out this is just partially true. My hair on the right side of my head is still thinning, with patches appearing behind On top of my head - I'd say it's slowing down - hard to tell. On the right side - regrowth (!!) Go figure. I don't get it. I can't get back to the dermatologist until November.

I think it was wishful thinking... but not only... I was much less stressed all summer, and was better with mmy diet and supplements.

I guess it's scary to contemplate the future with this progressing and permanent, as Sally said so well.

I think I'm officially menopausal now - my blood tests show practically no estrogen and I have spotting but no more periods. I'm getting more hot flashes than a year ago - often when I'm stressed I notice. I'm considering trying hormones again - but I have a hx of depression so this concerns me. Not worth depression - nnothing is.

My hair is now worn curly (curly curly) and has its good and bad days. It hides the loss for now. And like I said it's lopsided loss - much more obvious on the right side. Don't know if others have this.

I welcome the new people here to this unfortunate forum that fortunately exists for us. Take care,

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Replies to This Discussion

Permalink Reply by illustr8r on September 20, 2017 at 10:34pm
I have more hairloss on my right side too. My right eyebrow as well has less hair. I'm maintaining what I have I think with the diet but stress causes my head to itch. My elderly parents are visiting me right now. I want them to enjoy their visit, not be bored and I worry about them with their forgetfulness and unsure slow pace. One morning I had red spots on my scalp on about 5 hairs in my widows peak. I haven't had that in a long time-panic ensued-which just aggravates the situation. The redness went away. Maybe my shower was too hot that morning?!?

It's amazing the subtle difference between a good and bad hair day and how it impacts mood and confidence. I hate having to think about the top of my head every damn day!!!

Soldier on HalfbakedWho...take care.
Permalink Reply by Airam-FFA on September 21, 2017 at 12:09am
My hairloss is also much worse on the right hand side.

xOx
Permalink Reply by akb on September 21, 2017 at 2:45am

My hair loss is also worse on the right side! This is getting interesting . .  .

Permalink Reply by Isabel on September 21, 2017 at 5:24pm
This is really curious. My hair loss also affects my right side more than the left, which is also true of my eyebrow thinning
Permalink Reply by Airam-FFA on September 21, 2017 at 11:20pm
Hi again

My hair loss, especially on the right hand side has increased in the last month since I was prescribed the Clobetasol shampoo to use daily followed by mometasone furdate scalp lotion. I am meant to use this combination for two to three months but the redness and itching is also far far worse than it has ever been.

Now I wonder whether I would have lost so much more hair had I NOT started using the higher dosage Clobetasol shampoo etc. Who knows? :(

I had thought when I was initially diagnosed with FFA that I would cover it up with a wig/hair piece but, of my scalp continues to be so inflamed, a wig would further irritate it.

xOx
Permalink Reply by Halfbakedwho on September 22, 2017 at 7:34am

Hi again

No I'm not inflamed (lol) not around my scalp anyway, just inside my head... sorry bad joke. I don't really feel anything at all on my scalp. The only thing that is out of the ordinary, but ordinary for me now, is constant dry mouth and thirst, dry lips, dry eyes, dry skin... as you know (probably) the diagnosis for Sjogren's syndrome is complicated and often inconclusive, unless I want to get a biopsy in my inner lip which I don't. Maybe soon I'll have to, but there's not much anyone can do for it anyhow.

Again, this was less of a problem in the summer than now. I am thinking I am not going to be able to keep up this schedule of living in two towns (where I work half the week where we used to live) forever - I have to make some decisions and change things, but this isn't easy. Even though emotionally it's okay (not terrific but okay - certainly a bit lonely to be without my husband and family half the week) apparently my body isn't happy. I go back HOME to them today - this town is NO LONGER my home. I need to say that in all caps. Voilà. Bises for now. 

Permalink Reply by Minter on September 22, 2017 at 8:33am

HBwho, good luck with your your decisions about work- it is very difficult, I did something similar and traveled back and forth from family to work for about 5 years and it was not easy but it was the easiest for me to be the flexible one so it had to be done at the time. 

I am not inflamed either, but my hair?/scalp is sometimes tender, if I am brushing or touching my hair ( this only happens on the crown) it feels like it is being yanked out of my head at times.  But today it just feels like normal, no pain- Also my loss is worse on the right side, on top of my head where I do a side part, I use Boost n Blend on my part and that helps to disguise it and depending on the mood of my hair, I will switch the part to my left side which is not so bad.  But the hair loss in front of my ears is worse on my left side so I have to remember not to tuck that side behind my ears- I also use powder to disguise my side hair loss- Revolution Hair powder, the stuff is great and lasts all day.  

Permalink Reply by Halfbakedwho on September 22, 2017 at 8:53am

cool I will look that powder up! I like the name : )

Permalink Reply by Minter on September 22, 2017 at 6:21pm

Boost n Blend is awesome, I found out about here and got it on amazon- the Revolution hair powder I got in the UK from Superdrug, in a dark kind of gray color and a reddish color and it comes with little brushes that I use to blend the colors together and it stays on pretty much all day, its good stuff!

Permalink Reply by Halfbakedwho on September 25, 2017 at 11:27am

thank you : )

Permalink Reply by Donna on October 7, 2017 at 11:11pm
I was just diagnosed yesterday with FFA. The doctor prescribed me a topical clobetasol solution to be applied 2x/day for 2weeks then 1X a day. Now I’m worried since you say you are having more hair loss with the shampoo.....
Permalink Reply by Airam-FFA on October 9, 2017 at 8:41pm
Hi Donna

I have been using the Clobetasol shampoo and ointment for over a month. The hair thinning and loss continues but I will continue with this daily shampoo treatment until I see the Derm. again in Nov. I don't know if my hair would have continued to be lost at the same rate, had I not been using the shampoo. I think the receding hairline is just going to continue until such time as it burns itself out! Like NOW would be preferable - if only we knew what would trigger burn out - something must work :/

xOx

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