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Comment by Pam on September 15, 2013 at 4:59pm

I went to see my dermatologist this week and he has referred me to Dr Harries. My derm didn`t know about Dr Harries until I told him about his research interests, so it is only due to this group that this knowledge is getting spread around - so thanks everyone!

Comment by Pam on September 15, 2013 at 4:56pm

Thanks for the feedback. If anyone has tried using the stick on hairpieces do let me know. Your hairstyle sounds good Jules, and will hopefully mask the condition for some time. I have been carefully having my hair cut for several years, but it is now that it is hard to hide it, and I have started looking at wigs and hairpieces. I bought a nice wig from trendco, but so far have been too scared to wear it out!! I thought that maybe a front hairpiece would look less obvious. But the thought of having sticky tape on for weeks or days does seem rather nasty, so that`s why i wondered if anyone else had tried them?

Comment by Celia on September 15, 2013 at 4:46pm

Hi Jules - Dr Harries suggested I use Regaine as well as steroid and Plaquenil. Your hair do sounds good ! X

Comment by Jules UK on September 15, 2013 at 3:51pm

I was told about stick on hairpieces at bimingham's Trendco when first diagnosed last year. So far I haven't needed to enquire more about them and Pam, you've jogged my memory! After feeling desparate last week, I had my hair cut on Tuesday and my wonderful hairdresser has done a subtle makeover. By bringing more hair forward and re shaping the fringe, allowing long layers at sides to grow down so thickening the "veil" over the ears, I feel as though I can manage so much better! Sadly though, she said she wouldn't be happy styling a wig since she's had no experience and feels it's a specialised job.
I suspect I've been overdoing the Regaine and maybe that's why my hairloss has been quite marked. Is it OK to use steroid creams at the same time as Regaine?
Julie x

Comment by Pam on September 15, 2013 at 5:56am

Has anyone been advised to try stick on hair pieces? I saw a guy this week who works in a wig salon, and he recommended I try a natural hair strip that would stick along the front of my hairline where my natural hair has receded. He said he could match the colour, and it would be attached by a sticky tape which could stay on for weeks on end. I am a bit concerned that it could strip off any of my residual hair left underneath unless it is really in the right place. Has anyone tried using this system?

Comment by April on September 14, 2013 at 8:21pm

Hey ladies! For anyone who has found that rogaine helped their condition, do you use it in conjunction with other treatments? Also, for those of you who have used clobetasol topically long term, have you experienced any side effects from this medication?
Thanks!

Comment by Annie on September 13, 2013 at 10:17am

Christiekd, thanks for the information regarding your flare-up. I also lost a family member in August and wondered if that might affect my progress. My scalp feels better this morning.
Sam, I was also nervous about shedding eyebrows with Rogaine, but decided to try it anyway. I did shed a few, but they were quickly replaced. Within a month my eyebrows were thicker than they had been in years. I should mention that my eyebrows have not been affected by the FFA yet. I've never been blessed with thick eyebrows, and they have thinned over the years. You can find instructions online that tell how you should use Rogaine on eyebrows.

Comment by Debs on September 13, 2013 at 2:27am

Hi ladies, thanks v much for sharing your experiences of the steroid injections.

Liz, your wig will be secure without a wig cap, it is the perimeter of the wig that secures it so the wig cap is really not necessary. I never wear one and was advised not to by the wig salon I use, they also make wigs for the film and theatre industry so are very experienced. I get my scarves mostly from Acessorize the high street shop. Costs vary between £12 to £15 for silk.

Comment by Sam on September 12, 2013 at 6:57pm

Sorry for your loss Christiekd and thanks for sharing your regimen. For those using Rogaine on your brows, did you find that your brow hairs shed similar to hair shedding before it grows? I am worried it would shed what I have and not grow back...

Comment by christiekd on September 12, 2013 at 3:08pm

I had a setback about a year after taking plaquenil when everything was going fine for a long time. I believe it was because of stress in my life - my mother-in-law became ill, was diagnosed with cancer and died all in a span of about 10 days during this time. Afterwards, I started shedding again. It was a total relapse with itching and everything that went on for a while 3-6 mos. I also have to admit that I had been feeling so good for so long that I was not always remembering to take my medicines regularly.

When I went to my doctor, we started all over again with my meds: plaquenil, back on doxycycline, steroid creams, and steroid shots. I added protopic, and I also began Rogaine in earnest. Finally, I began taking tumeric after reading about it on here.

Well, it took a few months, but now I am back on track and am no longer on antibiotics. I am still taking everything else. My regrowth of eyebrows has been astonishing to me as well as the fine hairs around my hairline that have recently started growing. I thought they were gone forever. I'm also trying not to get too attached since we all know things could change rapidly.

From this relapse, I have learned a couple of important lessons:
1) Don't get lazy with my regimen of medication and lotions.
2) Try not to stress! I do this by exercising daily and taking time for me each day.

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