Comment

Comment by Susanne on February 15, 2013 at 8:52am

It's true, Rebecca, it is only hair, but that's huge. My friend told me yesterday that of several cancer patients she has known, one of the biggest deals for them was the loss of hair. She gets me. Unlike many of you, I've told just about everyone I know (and am fairly close to) about what's going on. It's just always been my way of coping. I figure it I put it out there, then a) everyone knows why I'm crazy sometimes and b) maybe I'll learn something along the way. Thinking about how lucky I am not to be losing my breasts, when so many more women have that experience, does put it in perspective, but it's okay for us to have bad days feeling sad, angry, despondent about what is happening. It's happening to us. I've had a serious cancer scare in my life - melanoma at the age of 40 - and I'm lucky to be alive, but this is STILL freaking me out. I so appreciate everyone here sharing her story. We don't know why this is happening to us, but I do know it's not our fault. I strongly suspect it's a combination of hormonal imbalance and autoimmunity. Rebecca, when I was first diagnosed, my husband started mentioning what it was like when he lost his hair. I calmly told him to never speak of this again in the context of my hair loss. The second time he brought it up, I got pretty pissed off. The third time, all hell broke loose (in a car!) and I think he finally got the message:)! He's actually an amazingly supportive man and will love me no matter what - I count my blessings every day - and it sounds like you have a supportive husband. We're lucky. I hope you all have someone who can support you through this - a husband, a partner, a family member or a friend. Have a good weekend, everyone.

Comment by ElleMN, USA on February 14, 2013 at 5:07pm

I had an appt with my dr on Monday and was feeling pretty down before I went in there. I talked with her about stopping the steroid injections and just letting nature take it's course but she strongly recommended keeping up with them to reduce the inflammation around the hair follicle in hopes of saving them. Eventually, hopefully, FFA will burn out. The inflammation is happening below the skin surface so the topical stuff doesn't get to where it needs to go; she suggested the same goes for the fungal treatments--they treat what's going on on the surface but not at the stem cell level. I'm only 45 so I decided to keep going with the shots. In addition we talked about phototherapy (this might be too expensive for me so I'm not sure i can do it). I'm also getting a prescription for an oil that U of M is compounding; I'll post more on that after I get it; it's the liquid form of a medication used for fibromyalgia (anti-inflammatory to help with itch).

While I am just winging it with the treatment I still can't help but wonder what the causes are. I waffle between completely obsessing about it to just saying "f" it, there is nothing I can do and nothing I did wrong that made me get this. It just totally sucks!

Comment by KarenGinny - Iowa, US on February 14, 2013 at 4:14pm

I have not gotten any wigs or hairpieces. The idea of wearing one sounds so uncomfortable that I will probably try to wait until I absolutely need one. My hair has thinned somewhat all over with one thin patch in the back, and mostly bare along the hairline, but I style it with long bangs - fringe, in the front and try to cover it that way. and lots of hair spray! I just hate when I'm outside and the wind blows it all over and so I keep a couple hats in my car and at home if I need one. I used to do a group exercise class at my local YMCA, but haven't gone in a while since I don't want my hair flying all around for everyone to see. I'd rather just walk on a treadmill or outside with a hat on or exercise at home. I really hate that I have this thing I feel I have to hide. And I don't want to be mistaken for a cancer patient. :( I've really only told close family members and they seem to think it's no big deal, but they don't really know how it feels. They are all saying "it's just hair!" but if it was them, they would see it differently! and as for acquaintences I have no idea what they think, just that I'm having a really bad hair day! At least all of you here understand and I am thankful to have found this group.

Comment by Simone NJ USA on February 14, 2013 at 12:04pm

Hi KarenGinny:

Are you wearing a wig or hairpiece?

Comment by KarenGinny - Iowa, US on February 14, 2013 at 11:08am

When I was diagnosed in March of last year, almost a year ago, My derm said there were some drugs I could try but he didn't recommend them because of the side effects. He didn't tell me about any other treatments either and I haven't done anything except using clobetasol liquid when my scalp is itchy and using T-gel shampoo and a good conditioner. He had been giving me steroid injections along my hairline Before most of my hair there fell out - so that didn't appear to do any good. So I've just been getting along without any other treatment. I keep wondering if I should get a 2nd opinion from a different derm. I know I have FFA, and I don't know if it's worth the expense. My insurance did not cover alopecia as a diagnosis so I had to pay for it myself. I think my hair would have fallen out no matter what, and most of it was gone by the time he did the biopsy to confirm it. The rest of my hair is still growing like normal and I get regular haircuts and color it at the roots, since I don't want to half bald and grey! I'm hoping it will just stop at some point and it has looked about the same for a while. I've pretty much come to accept it.

Comment by Simone NJ USA on February 14, 2013 at 10:21am

Hi Susanne:

I share the same sentiment as you do..we are all taking lots of meds, but really eventually this will run its on course in each of us whether we fake meds or not. I'm also beginning to question 'what's the sense of it all?' Either we just embrace the wig thing or continue taking meds for a length of time in uncertainty...

Comment by Susanne on February 14, 2013 at 10:11am

So from what I'm reading here, it looks like I'm eventually just going to have to embrace this whole wig thing. If there is no real evidence of any of these drugs helping before the point of it "burning out" after the need for a wig has already arrived, why are we all taking these drugs? I'm on Plaquenil, but am starting to wonder why. Rebecca, from what I can tell, no one really knows much about FFA. Unlike lichen planopilaris, FFA is no more than a description of what's happening. That's all. It's frontal. It's fibrosing. And it's alopecia. And now everyone is throwing stuff at it which may or may not help. Not having the most hopeful week, but we do get to vent here, right? I hope I get to the point of just being able to accept this fate with some amount of grace. It's just going to have to be the new normal, I suppose.

Comment by Simone NJ USA on February 14, 2013 at 9:49am

Hi Lorn: I live in NJ and know about your doctor. I'm actually going to another doctor who specializes in FFA in the ciy. I just wanted to be sure..so he has you on Plaquenil, doxycycline, steroid shots as well as desonide cream and clobetasol propionate topical solution. Are you doing all these treatments at once and the hairloss has slowed down? Also, have you had any side effects and how long have you been on all the treatments?

Comment by Lorn. New York, USA on February 14, 2013 at 7:28am

Debs, I live in New York and I see a doctor at New York University. He has me on those drugs as well desonide cream .05% and clobetasol propionate topical solution. The next time I see him I will ask him what the long term. He did say that it has been newly discovered in 1994. He also thought it could be environmental. This has not been seen in the Middle East. He has Only seen 2 people from china with this. Mostly western people.

Comment by Debs on February 14, 2013 at 1:15am

Lorn - where are you going for your treatment? Some of us in the UK are trying to access those drugs now but we are having to travel a long distance to see a dermatologist in Salford which is a plane ride away for me (or a 3 hour drive each way).
The lady that had FFA since 1996 did not say that it had stopped. If it has only been first recognised as a medical condition in 1994 I don't think derms actually know what happens long term because the longest anyone can have been diagnosed is 19 years... and since not many women would have been diagnosed in the beginning I don't think they would have evidence on how this progresses. I think that maybe it just slows down so it appears to have stopped but I don't know why it would just stop of it's own accord medical conditions don't often do that.

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