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Comment by Polly UK on August 26, 2013 at 3:08pm

Hi this is my first post! I was diagnosed with FFA a month ago but I'm sure I've had it for at least three years when my eyebrows started disappearing. I've just started on Hydroxychloroquine and applying Dermovate when my scalp isn't too sore. I've been prescribed iron tablets as levels were low in my recent blood tests and I'm also taking turmeric tablets.
I looked at Rogaine/Regaine in town last week but worried about the comments about blood pressure on the packaging as I'm on meds for hypertension. Would love to give it a try but maybe need to check first with Dermatologist or GP?
I've had some hair regrowth on my face in the pat few days - never thought I'd be pleased to have hairs sprouting from my chin or to have a moustache ;)

Comment by Maddy, California, U.S. on August 26, 2013 at 3:01pm

Hi everyone, This is Sandy from California in the US. I have been reading all of your comments about Rogaine and just started using it last night. I will apply it twice a day and will let you all know if I see any difference in a few weeks. I would love to participate in any research that takes place. Thank you all for your posts. I am not sure what I would do without all of you.

P.S. I also just got two top pieces made. I went for the fitting yesterday, and I have to say they looked pretty good and very hard to tell they are not my real hair. I was pleasantly surprised. She has to add a few final touches to them and I pick them up this Thursday. Should be interesting.

Comment by Brenda, IL US on August 26, 2013 at 1:17pm

Rogaine does work. I used it for six months last year until my new hairstylist advised me to stop using it in January. By May all the hair that had grown was gone. I wish i hadn't stopped. I'm not regrowing the hair in those places now. I was using the womens 2% then. Now i'm using 5%.

Comment by Annie on August 26, 2013 at 1:09pm

Hi all, just catching up on the posts from the last few days. I agree that the Rogaine research regarding FFA is a good idea. It is true that hair can't be regrown in the scarred areas, but perhaps the scarring won't occur as fast if the Rogaine keeps more hairs poking through. I also agree that everyone diagnosed with FFA should start using Rogaine immediately. I honestly only hoped to thicken up my existing hair and was very surprised to see the wispy hairs around my face were growing back. It seems like we're all playing a waiting game with the plaquenil, but I noticed new hairs growing within 2 weeks of starting Rogaine. At least it helped me to feel hopeful.

Comment by Pam on August 26, 2013 at 3:11am

Thank you for your very helpful ideas about starting to wear my wig. I am going to go out in it very soon! It is s synthetic one which I got from Trendco in London, and it has a wig cap which you pull over your natural hair, and then the wig just pulls on over that (so I hope it stays on!). I am interested too inhearing that Kath has got a hairpiece. How does that fix on? I would like to get one, but it seems a bit tricky with the type of frontal hairloss that I have got.
Thank you for your support, it means a lot to me when I am so devastated by this condition at the moment, as it seems to be getting worse. I think that when it was first diagnosed I still looked OK and was somewhat in denial of what could happen, and I didnt want the bother of using Regaine every day with only a slight chance it might help.

Comment by Kath UK on August 25, 2013 at 5:21pm

Pam - about wearing your wig - I would agree with Debs about taking it gradually. You could try just pottering in the garden for an hour in your wig and then maybe a take a trip to the shops somewhere you don't usually meet people you know.
But honestly if you do meet anyone they're most likely just to think you've had your hair restyled and tell you it looks nice.
I went to a big family reunion at the weekend (wearing my hair piece) and several cousins I hadn't seen for years said I was 'looking good'. I felt a lot better about photos knowing I didn't have to wear a hat or a hairband as I've had to do in the last year or so.
People are not all that observant, I've found. It's just that you are very conscious at first that you're wearing a wig but you do get used to it and it's a great confidence- booster.

Comment by Liz on August 25, 2013 at 3:21pm

Debs, when you started wearing a wig did you get a headache? I get a headache after an hour or so which goes within a minute of taking the wig off, so I think the wig might be pressing on a nerve. Do you wear a wig cap underneath?
xx

Comment by Debs on August 25, 2013 at 11:59am

Pam, just take baby steps with wig wearing. I wore mine fir just about one hour the first time. I looked round some shops and sat diwn and had a coffee... The 2nd time was about a minth later, last Sept, i wore a wig on the tube into London. I meet 3 femake friends for lunch. I had told them i had FFA bit they had not seen me in "hair". I then wire a wig from Sept to Jan when i socalised with trusted freinds. This enabled ne to get used to putting the wig on and i built up my confidence. I only told my very closest fruends, my mum and my brother i wear wigs, so i would just say you dont have to tell anyone you fear may not be supportive. People will just think you have a new hairdo. They will not be tuned into the possibility you are wearing a wig. Have a couple of short trips out to places where you csn be anonymous a big city like London is great you csn just disappear in the crowds and do it a little at a time. The thought of wearing a wig for the first time is horrific.... The reality is it really is "much ado about nothing" .. Xxxxx

Comment by sammi on August 25, 2013 at 9:07am

Pam regaine has really helped regardless of the instruction I have said before it has increased the fullness of my hair I only apply round the front but Dr Harries uk said any left do the middle hairline! where I have no hair loss, I wish I'd used it earlier I bought it once and returned it after reading the instructions, but after two doctors told me to try it I'm so glad I did. My fringe is so much fuller and I intend to continue, best wishes Sammi

Comment by Pam on August 25, 2013 at 5:25am

The consultants I have seen in the UK have told me that Regaine is unlikely to work with the type of hairloss associated with FFA. i have looked at the packet instructions on the Regaine, and it specifically says that it is more likely to work for women with top parting hairloss, not the frontal scarring type. I am concerned that initial use of Regaine can cause the hair to fall out - it should grow again, but maybe in our case it won`t! Then I`d be even worse off!
I have recently started taking turmeric thanks to all your advice, and think it has helped the inflamation a bit, and can`t do any harm.
I do worry slightly about the longterm use of hydroxychloroquine. Does anyone know about any know side effects of long term use? My consultant has said that i just need to get my eyes tested every year, as in a few rare cases it can affect vision, but otherwise just keep taking it for ever!
(Am very nervous about wearing my new wig! It is sitting upstairs, and I am just looking at it, trying it on at home, but not daring to go out in it!!! Help. I can`t face the comments I might get from friends and family when I firt venture out in it.)

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