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Comment by Virginian on November 14, 2014 at 11:03am

Hi, all

I just got my diagnosis yesterday FFA. I first noticed hair loss in my eyebrows and about a year ago I noticed my hairline receding. I thought it might be a reaction to the blood pressure medicine I was on so I went to my doctor and we spent several months changing that medication. I recently noticed my hai loss was worsening and my scalp was itching so I went to my dermatologist. He took one look and said I frontal scerlosing slopecia. I now have to go back to doctor to change my BP medication again because the derm wants me to take spiranolactone which he told me was a diuretic but he thought it woul stop the inflammation but I would never get my hair back. I don't know what to think. Any suggestions?
Virginian

Comment by PamW San Diego, CA, USA on November 14, 2014 at 9:31am

I agree with Classical Anne. I raised my tattooed eye brow when I read Linda's comments. I am a big believer in second opinions.

Comment by Jen S. on November 14, 2014 at 7:32am

Classical Anne - I love your wisdom.  Thank you for sharing your words with us all.  Have a great weekend!

Comment by Classical Anne in NC mountains on November 14, 2014 at 12:42am

Linda, please forgive me for saying that perhaps your derm simply hasn't had much experience with FFA.  AA is a horse of a different color, and not likely to affect only eyebrows and body hair.  In fact it generally causes devastating hair loss in random patches throughout the scalp hair.  And I don't know anyone on this site whose eyebrows haven't been affected to some degree.  What's more, I think if you started a discussion thread asking about body hair, you'd find a great number of us who have experienced that loss on our arms and legs as well.  I think my eyebrows disappeared first, but I really didn't notice the loss on my arms until there was no hair left standing [obviously it was fairly light].  Perversely, the darker hair on my legs remains just patchy enough to require shaving.  I'd like to take that to the Complaints Dept!

I don't mean to criticize your derm for suggesting you have both FFA and AA.  I just think he isn't aware how common the brow and body hair loss is amongst us.  After all, every MD has to work with a first case of something now and then.  I actually was my derm's first FFA, though she has many patients with other forms of hair loss.  It was my dramatic loss of eyebrows that caused her to suggest a plug biopsy in the first place.  Since then she has researched it well and we discuss options at every appointment.  Actually, it may be an advantage to have an MD who is not yet very familiar with the syndrome, as he/she may be more proactive in searching out options.

Yours was absolutely right to stress taking good care of yourself.  I believe restorative sleep and a positive outlook are worth more than a pharmacy full of medications.  Particularly when paired with a good support system.  I'm speaking from too much experience.  I know you cannot just will yourself to sleep well and wake up feeling good -- it's just not that simple.  But with support from your family, and the compassion and information of the ladies on this site, I believe the day will come, perhaps a few months from now, when you suddenly realize you've gotten thru an entire day without thinking about FFA.  It's a rather cruel disease, and of course I wish it had never happened.  I have hated the days when it took such an effort just to look OK.  One curious side effect many of us have noted is that we cannot stop studying everyone else's brows and hair.  Eventually even that just gets funny when I think how many times Mama said, "Honey, don't stare -- it isn't good manners."

I hope that we can help you find the answers you need, as we boost one another's spirits.  Don't hesitate to air your worries here, and share your little successes as they come.   I truly believe you will begin to feel better about it all, day by day.

Comment by Sas Holland on November 13, 2014 at 7:02pm

Donelle, I don't have to wait because it is already very mild or little inflamation as the biopsy showed. So if I strat the Cyclo next week I can have the test stemcell transplant of 50 grafts  after 1 month. But I am still not sure wether to do this, since my hairline recession is not so bad yet, I can still hide it easily with my curly bangs. So I thought maybe I try this strict diet first for maybe 6 months or so (though I find it very strict and I hope I can stick to it, since I am very fond of sweets and red meat and whole grain bread). And when my hairline really starts to show then I can take the test tanasplant, because I hate to take such strong medicine as Cyclosporine A. But then again if I wait till it is really showing, then  I might be to late, beacause then I  have to wait 9 months after the test transplant and then I will need 3 times the normal transplant they told me, with each time 9 months in between. That is  if I want to restore my natural hairline completely from ear to ear.

LInda, I didn't know either that you can have both AA and FFA. I also have no hairs on my arms and upperlegs and my eyebrows were the first to dissapear completely.

I had them tattoed years ago for the first time., which is very satisfying. I am praying that my eyelashes don't start falling out though.

Comment by MJ on November 13, 2014 at 5:36pm

Jen,
It is hard to say. I don't think I have had any loss while on it but my hair recession happens slowly with no outward symptoms. I have also been using it on my eyebrows. They have stayed the same. Have not really noticed any new growth but definitely no more thinning. I use the elidel over the rogaine nightly. I use the clobetasol every other morning.

Sas, several of us follow that kind of diet, although now that I am working full time, i have been breaking the rules more than I wish. I almost wonder if it is the diet and not the meds that have done the most good....

Comment by Donelle on November 13, 2014 at 5:10pm

Sas Holland the hair stemcell transplant sounds fantastic.  Please do keep us updated as to your progress.  This is the first I have heard of it.  Do you have to wait until the disease is in remission before the transplant?

I have been following a diet such as you describe.  I feel much better on it, so in that sense it is working, but not sure whether any difference in hair loss.  But the psychological benefit is worth it.

Comment by Anne Louise on November 13, 2014 at 4:21pm

Linda, I haven't heard of anyone with both FFA and AA. My understanding is that eyebrow and body hair loss are a feature of FFA. My eyebrows are completely gone as well as my arms and now my leg hair is becoming sparse, especially thighs. I am curious as to any explanations your derm may have given you.

Comment by Jules UK on November 13, 2014 at 2:40pm

Had a call back from my lovely GP and I can't take St Johns Wort whilst taking Plaquenil. Time to fall back on yoga.
Linda, I found focussing on diet and exercise was a good distraction and helped me feel I was doing something positive for myself in dealing with FFA. Keep in touch with the forum. That also helps, a lot!
X

Comment by Sas Holland on November 13, 2014 at 2:17pm

Hi Annie, thanks for letting me know,  that's already a quick result, because I understand it normally takes a few more months to  notice any difference

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