My hairpiece is supposed to last about a year, but if my hair recedes considerably during that time it will have to be made larger I suppose! It is all one piece, just a strip that goes across my forehead and sides exactly where I have lost my own hair.

I had it done by Rob Davidson-Lamb at Barefaced Medical Aesthetics, 127 Promenade, Cheltenham, GL50 1NW tel 01242 222690. They have a website giving more information on what they do.

Polly - that is great to hear your eyebrow tattoo went well. We are hoping to have a get together here again in Bucks when the weather is better - I'll send out a choice of dates as before and we'll make a best fit plan.  Looking forward to seeing you then,

Very best wishes.

Yes MJ, I just started using Rogaine foam as derm said it would be easier to apply.  Far from it I found as it just goes all over on top of the hair itself and difficult to get it down into the scalp. I would imagine one has to divide up your hair and apply in sections. What a job that would be on a daily basis. Derm said just put on & rub all over scalp but you'd have to put quite a lot to actually get it down  through the hair into the scalp.

Thank you for your comments about Rogaine foam. I just started using the liquid and will stick with that form. I think foam might be easier for men with really short hair but the dropper method might work best for women. Are you actually growing hair with the Rogaine

Well it appears no matter whether one uses the foam or liquid, it should be applied by sectioning off your hair. Does everyone who uses rogaine, use it on a daily basis as suggested or every other day?

I have a very tender scalp and could not use clobetasol, so was advised to start w/ the 2% solution. So far, so good. I've been tilting my head back, working the dropper down to the scalp, then rubbing it around w/ my fingers. It takes less than a minute to apply. Right now, I'm using it 2x/day, as per pkg directions, but hope to advance to the 5% solution and use it less frequently. Does the 5% say to use it just once a day?

I have been using Rogaine foam 5% for about 6 months now. For the first 3 months, I applied it twice a day, but after that just put it on once a day (evenings). My fringe has definitely not gotten any thinner and my hair behind the fringe seems to feel a bit thicker. It seems like it's a little easier to hide the real thin spots since I've been using it. But,like Jules said, who knows really what would be happening if we weren't using it. I don't find it a big deal to use..yes, I part my hair in stages put some on my scalp (the best I can) and rub it in. It does take about 5 minutes for me as well. I actually seem to switch back and forth between the foam and liquid. Right now, I seem to like the liquid.

Are you all using the brand name Rogaine or the generic or store brand minoxidil?

I am using the Rogaine brand and purchase from Costco.

Yes, I used my prescriptions towards the cost of my hairpiece!

Hi all, I'd like to weigh in regarding the use of Rogaine.  I've been using 5% generic Rogaine foam for 10 months now.  I used it twice a day for the first six weeks, then once a day since then per my doctor's instructions.  I started out just using it around my face and on top of my head where my doctor said my hair was getting a little thin.  I started sprouting hair in less than a week in areas that were not heavily scarred by the ffa.  I was so pleased with the results that I started using it on my entire scalp at my hairdresser's suggestion.  I had my six-week highlight and color appointment last Friday, and my hairdresser of 20 years said my hair has never been thicker.  Of course, my hair isn't as thick in the areas where the ffa is active, but my hairline has receded very little since my diagnosis in March, 2013.  I've been using the foam version, but plan to try the liquid when my current supply runs out.  The foam builds up on my hair and leaves it a little dull, and I wonder if it's the reason for the extreme static electricity I've been experiencing.  I'll let you know how I like the liquid.

Hi MJ, I have not seen any white flaking with the Rogaine so far.

Rita, I have used both, and honestly find that there is not much difference between the foam and liquid in regards to how often my hair needs to be washed. I think the liquid probably does go on a bit easier, but I find that it is also quite a bit messier to apply. I have spilled the bottle on accident a couple of times too :(.

I know my dermatologist said that the foam is usually less irritating.

Please can you tell me if Regaine and Rogaine are the same product?

Many thanks

Jean, as I understand it both Regaine and Rogaine are brand names for minoxidil, but one is sold in the UK and the other in the US.

Sam, my shedding doubled about 2 weeks after I started using 5% rogaine foam.  It lasted for about 2 - 3 weeks, then I went back to my normal ffa shed.  There wasn't enough shedding to notice a difference in the volume of my hair, but it did freak me out at first.  Shedding is supposed to be a good sign that it's working for you by stimulating the hair follicles to replace old "dead" hairs with new and improved ones.  I also had itching and discomfort for about a month while my scalp adjusted to the rogaine, but I'm very happy with the results after 10 months of use. 

Sam, I have only started the rogaine lately but haven't been all that good about it. I never intended to do it twice a day, only the once.  Then when I put the tumeric fluid on (trying this instead of Clobetasol for inflammation on scalp), I feel it's put down a layer on the scalp that  the foam will not be able to penetrate through. I just watched a video online that mentions the scalp should be clean and none of the topik cover up should be there and that totally make sense.  I do use Topik to help disguise the hair loss at times.  I don't know, it's all a guessing game isn't it. No shedding yet as just started but I just know I will panic as well, too precious little there to start with.

If anyone is experiencing any type of vision problem, such as blurring or trouble focusing please get to an eye Dr.  This is a serious side affect of plaquenil.

Brenda - I do get that occasionally esp noticeable when driving.  How are people having their vision monitored.  Mine was just done by reading from a card in much the same way as when one goes to the optician - is there any other way that this is done ?

Celia my doc gave me a paper that i keep on my bathroom mirror and i check my vision daily.  There is a white dot in the center of a black square with vertical and horizontal lines creating little squares.  You cover one eye and view the dot from 14".  If any lines or squares are distorted, irregular, or wavy or if a blind area appears stop the plaquenil and see your eye dr.  A friend of mine on plaquenil for lupus had this happen but her vision returned to normal.  She cant take the drug anymore.

hi Terry,

I have been taking hydroxychloroquine for about 5 months. Initially I felt better but now my eyes stream every day and are very watery and sore. I am going to see my doctor tomorrow. I also had my eyes tested and the optitian refered me to my GP. I had blood tests and all was ok.

Just found this site and it is so interesting.

Claire

Thanks Terry for the reply. It seems that alot of the sufferers are in the USA, are you based in the UK. I think I have had this contition coming on for years. The first thing I noticed was my eyebrows thinning-they have gone completely now but I have had them tattoed which is great. I feel disappointed that little is known about this condition. It took the doctors and dermatologists nearly a year to make the diagnosis. It seems so obvious to me know!! Kind regards Claire.

Hello

I am a new member

My hair has been eaten away at the front for the last 10 years. It started with my sideburns and I have now lost 2 inches off the front hair line. When I first noticed something was wrong I was sent to my local hospital but they didn’t have a clue. Eventually told me that I had a rare form of alopecia and there was nothing they could do.That was over 8 years ago.  Imagine my amazement and delight when I discovered your website as I have never seen or spoken to another sufferer before.

I live in the east of the uk. Can anyone recommend a good  doctor or hospital that will attempt to help? 

Meme

Hello Meme,

I have just found this site as well it is very comforting to know others are in the same boat. I live in the South East of England and see a dermatologist called Dr Felton.Recently my symptons have beem worse-hairline really itchy eyelashes falling out so on friday I had a steroid shot at my GP's. I think I am feeling slightly better.It took me a long time also to be properly diagnosed and I still feel it is all a bit hit and miss with what to do long term.

Claire.

Thank you for your reply Claire. When the hospital left me undiagnosed the condition wasn’t too bad. I had only lost about 1cm so it was not so noticeable and easy to live with. Of course it’s a different matter now and when people talk to me it’s my hairline, or lack of it, they stare at. It distracts them. When that happens you know it’s getting bad.  I have, up to now, just sat back and excepted it but reading some of the other ladies comments and hearing about their treatments is making me think that maybe something can be done.

Meme and Claire - there are a few of us in the SE of England..  We have had a couple of get togethers.  We would like to have another in the spring.  This will be at my home - just off the M40.  It would be lovely if you could join us.

Celia

Welcome to the group Claire and Meme! We are all in the same boat, and it is good to share feelings and experiences with others. My FFA has been ongoing for about 10 years, and I have tried all sorts of drugs, topical lotions and diets. I have now had a custom made hairpiece fitted, and my eyebrows tattooed,  which seems to be the answer for me at the moment, as at least my looks have been restored, which gives me so much more confidence in going out and meeting people. I will have to accept certain limitations (such as easy underwater diving and snorkelling!), but being able to just go out and walk on a windy day without worrying is a great bonus!!

Hi, Pam.  If you don't mind, could you comment about the cost of your custom hair piece vs. a wig?  Thank you - don't mean to be too personal . . . .

Also, is there anyone planning on attending the CARF Patient Conference in Chicago, IL this April?