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Comment by Chrisy, MA USA on April 9, 2013 at 4:58pm

My derm mentioned that every time I have an appointment with her she would do the test. I've seen her twice so far and she tested me both times. Also you have to do eye check up twice a year.

Comment by Chrisy, MA USA on April 9, 2013 at 8:11am

Celia,
Thank you for the information you provided. I tried to change my eating habits. So I started with the master cleanse for 10 days. I guess I was hoping that I will cleanse my body and start fresh. I stopped taking all my vitamins in those 10 days only plaquenil. It didn't help. Actually it made things a little worst I think. Since then for about 2 weeks now I went gluten free, no alcohol, no dairy, eggs, meat. I have a lot of energy and feel great, my nails are the best I had in years but still I can see the inflammation in my scalp. It is progressing slowly but steadily. That said I am just not sure if changing your eating habits will help with FFA but it definitely help somewhere else. I will continue with this diet for now and see what happen.

Comment by Debs on April 9, 2013 at 1:50am

Ellen, no I have not taken accutane. I have not taken any medication at all apart from antibiotics a couple of times for childhood illnesses and I have used the contraceptive pill a few times in my life but not more overall than about 5 years in total. I don't think my FFA is related to any medication I have taken.

Comment by ElleMN, USA on April 8, 2013 at 8:23pm

I've been reading about lipids and sebaceous glands and was reminded that I took accutane in my early 20s. I'm wondering if that could have changed my sebaceous glands forever and now I'm paying for it.

Have any of you taken Accutane?

Comment by Michjo57 on April 7, 2013 at 11:03am

Caro, I'm having my eyebrows done next week and I am soo excited. The thought of not having to put them on every morning will be so nice, not to mention going camping and stuff like that. I know what you mean when I put my wig on, it takes years off. My son said I looked 35 when I wore my red one. My hair is usually brown and when I wear the red one that is very similar to my style, everyone says I love your hair color. I'm thankful there are cute wigs out there! I love the fact that they are all highlighted now, you just can't tell they are wigs. I get more compliments when I have my wigs on than I did with my bio hair.

I have resigned to the fact that nothing is going to help my hair grow back, except by the grace of God! I've just got to move on from going from doc to doc. I'm at peace with it actually. I'm not losing my hair because of chemo or anything. I'm not going to take Rx that might injure my organs. I have read many times that your body will take care of LP on its own, in due time. Might take years though. Peace to all!

Comment by Caro UK on April 7, 2013 at 7:31am

Pam I'll change my profile photo once I've had my eyebrows done, and be sure to be wearing the wig as well! There is a new me on the way! I tell myself to think possitively. My hair is progressively getting thinner and hairline still receeding but when I put on my wig, I see the old me looking back - well not so old, in fact I look years younger so that has to be good!
I've been looking at Patti's Pearls site - great advice on there, especially about how to make sure a wig stays secure using double sided tape. Thanks Debs.
Michelle, So sorry about your hair loss. In answer to your question I have no follicles visible in the areas where my hair has been lost. They have scarred over. I have about an inch of completely smooth white skin where my hairline originally was. The LLP is still very much active and my hair follicles are inflammed at the hairline and about an inch back from it at the front of my head. I'm taking Planquenil but realistically I don't expect to see any improvement in my condition for many months and maybe not at all. I've been prescribed Dermovate scalp lotion to use for the inflammation. I have never had any scalp irritation or burning like some other people have described.
Liz, personally I would advise against perming because of the chemicals used in the process but hair colouring is fine as long as ammonia is not used. My derm told me I could carry on having my hair coloured.
Enjoy the rest of the weekend everyone - the sun is out here in the UK for a change!

Comment by Kath UK on April 6, 2013 at 5:39pm

Debs, thanks for the 'wig support' website info. That was a great help and I'll look that site up now. Getting my first wig next week (if it is ready) so I appreciate any hints and tips.
Caro, thanks for your info. too. Like you, I'm getting a synthetic wig (I was told that I had a limited choice on the NHS - which is fair enough. I'm happy that I'm being given a free wig!). I don't know how things work in your NHS area but it seems I can't use my wig allocation as part of the payment for a more expensive wig. The one I've chosen seems OK and I'm going to give it a try and see how it looks and feels to wear. If I'm not happy with it then I will pay for a more expensive one myself.

Comment by Liz on April 6, 2013 at 3:36pm

Hi. Does anyone know if perming or dyeing hair makes any difference to the hair loss? I ask becuse I was thinking that I might just do something a bit funky with the hair I have whilst I still can so I think I might perm it and dye bits of it. I have no irritation which is good.
Celia, thanks for you email. How do i access it on this site so that I can reply?
xx

Comment by Michjo57 on April 6, 2013 at 11:07am

I have been going to the University of Colorado for my FFA. First they put me on Minocycline and Griseofulvin for six weeks. The only symptoms I had were hair shedding, no inflammation, no itching, no burning. The only thing is Griseofulvin is hard on the liver. I decided I did not want to take it and have the chance my liver gets damaged. All my problems started after prescription drugs anyway. Last visit to the doc they started me on Spironolactone and Avodart (?) like Propecia. He said a recent study at Duke University used this regimen with good results. My question to all of you is can you see your hair follicles in the hair loss area? I can't see how taking these meds can regrow hair if there are no follicles, which I don't have. I hate taking prescription meds, I have had 6 different diagnoses since this all started, so I don't know who to believe any more. I will let you know if I start the new meds and if they work. I feel great and I hate to have any side effects. Do you all have scalp symptoms like itching and burning? I did for about three months, then I took doxycycline for about 3 months and it all went away.

Comment by Michjo57 on April 6, 2013 at 10:59am

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