Comment

Comment by Minter on March 31, 2018 at 9:13am

@illustr8r - Yes, I too have accepted my fate! I am done with obsessing over my hair and spending money and time over this stupid FFA.  Apparently I am/was one of the ones that seemed to get every single side effect from the medications she prescribed in the beginning of my diagnosis when I was pretty much like, I'll take anything and do anything just so my hair won't disappear!  But then after learning about the side effects and learning that even with the medications, FFA hair loss still creeps along- I decided there is no good reason to put my  body through the awful side effects and potential long term side effects.  Since then I tried a hair topper and an intralace system and gave up on both- I now have my hair in a cute spiky cut that hides the receding hair line and I have my powders and potions to also conceal the hair loss and so far it has all been working. When it stops, I have more or less decided that if my hair loss gets to the point that I need a wig I will shave my head and get a wig for those times that I want hair and otherwise, bald is beautiful baby!

Anyway, everyone deals with this disease differently, even every person here on this forum is dealing with this disease differently and there is no right or wrong way to cope with this. I do know that being here has helped me cope with it waaaaaaaay better then if I was on my own and I thank you all for that. 

Comment by Pascal on March 31, 2018 at 3:10am

I've learned yesterday that my sunblocker contains titanium dioxide (TiO2), I used it the last summer abbundantly. Titanium dioxide is been frequently linked to FFA so if you use sunblockers be sure to check the ingredients with the manufacturer first.

Comment by illustr8r on March 30, 2018 at 8:53pm

@Minter I had a conversation with my family dr on Wed. about the no meds/meds conflict. She supports my decision because of the side effects that are complicated by my kidney problems. She is happy to know that the reason for the hair loss has finally been found. She admitted hair loss and what causes and cures it can be a frustrating mystery when it goes beyond low iron or thyroid problems. Anyway, I’ve accepted my fate. I spend my days hoping my hair loss remains stable and I look at wigs now and again. 

Comment by ammie on March 30, 2018 at 8:24pm

Thank you, Minter. I totally understand not wanting to take medications. I have to have blood drawn every two months for the medication I am on. I don't know how much longer I will continue with my meds. 

Comment by Minter on March 30, 2018 at 8:47am

ammie, that is great news- stable & inactive is always good!  

I saw my own dermatologist several weeks ago and she switched my appointments to once a year also, combining the hair check with the yearly skin check.  I think she doesn't know what else to do with me since I refuse to take the medications she wants to prescribe :-/

Comment by ammie on March 29, 2018 at 8:12pm

I had a good check up with my dermatologist this week. She agreed that my hair loss seems stable. She seems to think my hair has even filled in a little but I don't really notice that. To me it looks the same. She switched my appointments to once a year instead of every six months. All in all I was pretty satisfied with the visit and hope this unpredictable disease remains inactive. 

Comment by Pascal on March 27, 2018 at 3:29am

Thank you @akb, I will try it also; I've lost almost all eyebrows but it's worth trying to keep what remains.

Comment by akb on March 26, 2018 at 9:10pm

Pascal, Elidel helped with mine! They were only starting to thin (and I had a bit of a hole in one of them), but I think the Elidel arrested the loss and filled in some missing parts. They're definitely not as big as they were before, but I am hopeful that maybe they will be with time. 

Comment by Pascal on March 25, 2018 at 7:25am

Please I need advice about Protopic ointment; do I apply it only on eyebrows and the outer hairline, or to the entire scalp? Do I wash it off after some time or I have to leave it on?

About Elidel cream, does it really help to regrow eyebrows?

Comment by Jules Australia on March 25, 2018 at 6:37am

Thx again pauliegirl, I would be interested in any new info you might have on either disease,...would be appreciated. I'm glad that your ffa symptons seem stable, whether from AIP diet or otherwise. I have seen many others here who have tried it without much benefit, so who knows, maybe it's coincidence or maybe it is beneficial to some & not others....I agree that there is quite possibly a connection between some conditions,espec autoimmune & gut health. I have always eaten really healthily & exercised much of my life (nearly 60)....so I think there is also most likely genetic & hormonal connections involved....A strange observation....I always used to prefer the warmer weather to the cold & Graham vice versa....now I have a disorder (lpp/ffa)that is aggravated by hot humid sweaty climate (discomfort with scalp itching tenderness etc)& Graham's scleroderma, partic the
Raynauds syndrome is aggravated by the cold. Also what is it with many of the Doctors/Specialists who are misdiagnosing or dismissing our suspicions of the disease we feel we have after many of us have come to the conclusion from endless research; even when we had never heard of the condition prior to our symptons. There are many intelligent women on this forum who appear to have the same story....diag themselves correctly before biopsy from researching....way ahead of the often slip slop guessing by Doctors &/or their lazy cop-out remarks like "oh, its age related, most women have some hairloss in peri or post menopause" bla bla & so on......just as it seems you figured your scleroderma diag way before it was confirmed....but we rely so much on the researchers to find a CURE for many of these rarer conditions....hopefully they have the answers well before our children reach our age!!
bla"

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