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Comment by Halfbakedwho on January 11, 2018 at 4:28pm

For those of you taking Plaquenil, what are the side effects? And Finasteride is normally prescribed for prostate cancer (!).  Do these seem to help at all? I am going to see my specialist in March, and when I saw her last at the end of November, she implied that that is our next step. I am very wary of taking meds internally. 

The person who was supposed to get back to me with an estimate for hair extensions hasn’t done so - I honestly think it’s because it isn’t « bad enough yet. » Which is fine. 

I have been thinking of how 12 step recovery applies to just about everything in life we can’t control. I am powerless over this (step 1). I have to live in today. I like to think that if I can stay in today, I will at the very least reduce my stress level. 

Speaking of which - someone pointed out my hair loss to me (I didn’t  notice it myself!) for the first time almost 3 years ago. I was getting a second master’s degree at the time, and my doctor told me it was from the stress, and not to worry (ha!). So for almost two years, I did nothing, while watching my hairline and waiting for it to grow back (double ha!). I remember the feeling in the pit of my stomach that something wasn’t right, because then I noticed hair loss not just on the sides, but at the top of my head. I remember looking in the mirror, feeling queasy, then turning away, telling myself it was just menopause and it would stop/grow back/ etc. I would get my hair brazillian-ed and blow dried, and noticed the hair loss, and the thinning, and just push it out of my mind. I was given my diagnosis last spring with just a photograph and an internet consultation, then it was confirmed by a specialist. I called my mom, and cried. I couldn’t sleep. I couldn’t eat. I went to a party, and stared at everyone’s hair, and could barely speak. 

I have started to read here every day now, and I find it helps so much with my acceptance. I notice that we are one of the most active groups on here (yay us!), and because of all of you, it feels les like a catastrophe. 

One thing we learn in psychoanalysis - everything in life is about loss, and creativity. That’s overly simplistic, but creativity is how we adapt to loss - from birth on. So there you go. 

Comment by Liz on January 11, 2018 at 3:26pm

Did anyone see the feature on the 100,000 Genomes project on the BBC news the other day? A number of us with FFA are part of the research and by the end of this year they said that they should have mapped many thousand gene profiles and would be able to identify where many individual rare diseases come from....I'm not scientifically minded but I get the idea that they will be able to identify the gene and therefore tailor treatment options for people with a particular condition and then look at possible causes and cures......Lets hope that FFA is one that they are able to profile. The dermatologist I saw last year thinks it might happen :)

Comment by Afraid on January 11, 2018 at 3:10pm

Thanks Ammie 

i will try and see see if I can increase plaquenil & see if I can access finasteride.  How long did you take medication before it stabilised your hair loss?  I’m beginning to lose hope. 

Comment by illustr8r on January 11, 2018 at 2:55pm

@Yash I struggled with hair loss since I was diagnosed with chronic kidney disease in 2013, a life changing event. Then, my last big flare with Feb. 2017- 2 months after my husband was laid off from his job of 18 years. I do think stress is one component of many that sets off this stupid disease.

Hubby is very supportive-whatever I think I need to make myself feel better he'll do what he can. If I want to look at wigs, he will drive me and help. I'm hyper critical of my hair and he's aware of it-lets me know if my hair has gotten out of shape in the wind etc..I couldn't ask for a better guy. :)

Comment by Yash on January 11, 2018 at 2:15pm

Hi all, thanks for your advice.

One thing I am wondering which I haven't seen in any website about FFA, is stress a contributing factor. They say stress causes other types of hair loss. I think my hair loss started after I got married - I look at photos of me back then and noticed that my side burns started to receed but it could just be coincidental.

My other question, have your partners been supportive and understanding? 

Comment by ammie on January 11, 2018 at 10:06am

Afraid,

I take Plaquenil twice a day. Each pill is 200mg. I take finasteride (2.5mg) once a day. I don't have female pattern hair loss but my dermatologist prescribed it anyway. She believes it helps with FFA. I use Rogaine once a day. I'm supposed to use tacrolimus every day as well but it's so greasy that I only use it a few times a week. 

Comment by Minter on January 11, 2018 at 7:02am

 Liz - no problem, I am glad we are able to share our experiences with what we are doing or not doing for FFA, what works for one person might not be the thing for someone else and vice versa! 

Enjoy your holiday and hopefully your wig/hair will be the last thing on your mind while you are relaxing :-) 

Comment by Liz Lov on January 10, 2018 at 4:16pm

Minter- Thank you for your thoughts on the lucinda ellery system, it does seem to be a great solution.
For me, the hair loss is so advanced that I would also need the top mesh and a parting and side pieces so quite extensive.
I would need a LOT of tape for both the top and the sides. I'm not sure I could deal with the maintenance visits, I still travel a lot so fitting in a visit to London might be sometimes restricting. Also, like you, I'm not sure about having something 'attached' to my head that I can't remove.
I'm wearing wigs now full time and liking the look. Time will tell how I manage them out in the wind, playing golf etc.
I'm going on holiday tomorrow to a very windy place so that will be a great test.

Comment by Afraid on January 10, 2018 at 11:37am

Hi Ammie

so good to hear some positive news.  Can I ask how much plaquenil you take and do you take oral or use topical finasteride?   I asked my dermatologist about finasteride and she refused because she said it only works if alongside female pattern hair loss.  I can see hair  disappearing daily although she was adamant early stages!!! 

Yash

i still go to the hairdressers (although it’s not the joyous occasion it once was) & I still dye my hair but perhaps more carefully.  I understand exactly about your hair looking dead it’s as if the structure changes?!  However, when I can manage hairdressers it does make me feel ‘normal’ for a little while.  Only you can make the decision re taking medication but despite my huge reservations I decided I had to give it a go.  

I wish all dermatologists would read the posts on this site.  It seems to be a geographical lottery and scattergun approach to interventions! 

Comment by Wyobalance on January 10, 2018 at 11:06am

Everyone might be interested in a stem cell/skin/follicle study  https://www.sciencefriday.com/segments/a-hair-closer-to-lab-grown-m...

Yash, do you know about the CARF organization.  Cicatricial Alopecia Research Foundation   The "for patients" tab is helpful.http://www.carfintl.org/

It's a tough diagnosis, but hang in there!

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