Debs, you look lovely. I want one! That's just the style I'd go for. It would give the hair that I've always wanted :o)
I am going to see Dr Harries next Friday. I am travelling up from Brighton for the day. I've never been to Manchester before so it's a shame I wont have more time there. Are there any questions that anyone feels it important that I ask, either for myself or for all of us. I'm a bit crap at talking when I'm nervous. I want to get as much out of this appointment as I can. Anything you all think I should ask would be helpfull :o)
xx

Liz, if you check the previous page I posted some info for you a couple of days ago, I saw a page band wig that looks just like your hair in the photo on this site, on sale at the wigtrendz website. I have just got this new wig from them and have also ordered a page band wig too. I know you had mentioned you were looking at wigs a little while ago. I don't have any questions for Dr Harries, I stared on the hydroxchloroquine a few days ago. Take it with breakfast and dinner. No problems with it. Dr Harries is very nice Liz so you don't need to feel anxious talking to him, he is very understanding or our situation.

Rebecca, the excimer laser treatment you referred to sounds very exciting, especially since it doesn't involve drugs w/ negative side effects. See http://archderm.jamanetwork.com/article.aspx?articleid=1105344
I agree that would be a great question for Liz to ask Dr. Harrise.

I don't know if anyone noticed, but one of Dr Harries' papers is referenced in the article, which suggets he may be aware of the research. It's exciting and at the same time frustrating to know something might help our condition but we can't get at it (yet)!

Jules, yes I went back and looked his name is referenced but he may not be aware of the article if the Dr doing the researched was only referencing Dr Harries earlier work.
Liz, can you run this past Dr Harries on Friday please - EXCIMER LASER treatment with Alice's link below.

Hi Debs. Yes I will mention it to Dr Harries on Friday.
Have any of you heard of 'Hair In XS'? They specialise in a mesh hair loss system apparently. I realised last week that thier shop is about a 5 minute walk from my home. I popped in to thier shop on Saturday and thier before and after pictures are very impressive. Anyway I have an appointment on Wednesday to learn more about it :o)
x

Liz, I have not heard of that specific hair system but I have met a lady with FFA wearing a hair system, it was excellent, she goes to a place in London www.greatlookinghairlondon.com mob 07949 207848 I would go to your place and maybe check these guys out too and see their prices. I met this lady in December at a support group meeting run by alopecia UK. I can definately recommend this salons work having seen how it looked on her.

Thanks Pam. I have an all over thinning of my hair. It's a lot different now than it was. I notice it especially before I do anything with it in the morning. It sticks out like there is electricity running through it. Also there is a lot more noticable shorter length hair thats about 3 or 4 inches long and this shorter hair sticks up!
xx

Liz, the static electricity look and shorter hairs sticking out sounds as though your hair may be dry and breaking off. There are products available that are supposed to help this. Perhaps you could ask your stylist to recommend something. I've noticed that my hair is a lot drier than it used to be. Don't know if it's related to the FFA or not.

Hallo I'm new here and I have had LPP for 3 years.I am happy to have found this group.Here I see that some of you have tried the same drugs and creams as me.

Yesterday I posted on another alopecia website did anyone know about excimer lasers... 2 guys have replied that they are aware of several small scale studies and it is being talked about as helping alopecia areata, they don't know if it is going to be offered as a treatment option on the NHS in the UK but it has been shown to be effective. Lets see what Dr Harries has to say about it. Good luck Liz, thinking of you today. xxx

Hope everything went well yesterday Liz, I was thinking of you. He probably won't tell you anything new but a Friendly professional opinion will hopefully keep you positive!x

Hallo :o) What a lovely man Dr Harries is. He was friendly and considerate and listened to all my concerns. I didnt feel at all rushed and I sat talking to him for about 40 minutes. He told me the same things that he has told those of you that have seen him, that they dont know why and who this conditin affects or the eventual progression. We talked about medication etc. He looked at my hair now and compared it to the clinical photographs I had taken back in September. We both agreed that I have lost more hair since then. He also checked my nails which are very pitted.
He wants me to take Doxycycline until I see him again in 3 months time. He wants me to double it to 200mg daily. He injected steroids in one area of my hairline and says if that goes ok he will inject all along the hairline next time, it didn't hurt at all (hopefully to stop the inflamation underneath). He also suggests that I use mens strength of minoxodil (Regaine) because I have thinning over the top (which may not be related to the FFA).
I asked him a few other questions. Swimming is fine. There is no evidence to suggest that diet has any impact on this condition. I mentioned the Excimer laser treatment and he said that there is no evidence that it works. He said that me and my mum both having FFA is very rare.
For any of you in the uk who are thinking of getting an appointment with Dr Harries, I recommend it. He knew about the forum :o)It was so nice to meet with a professional who has a real passion for this condition and who is happy to sit with you for as long as you want to talk.
xx

Hi everyone. So glad your appointment with Dr Harries went well Liz. Good luck with your treatment.
I've not felt at all well for several days. Burning pain in my stomach and abdominal cramps. My husband has had similar symptoms otherwise I would think it was the hydroxychoroquine that was causing the pain. I've noticed that after I take the drug I have stomach pain but that it passes off quite quickly. I always take the tablets just after a meal.I've missed several doses as I haven't felt well enough to eat much.

Hi Debs,thanks for the advice. Sounds like your diet is really healthy and you work out a lot. You must be very fit! I am feeling better today. I went to work on friday which didn't help my recovery. I really should have called in sick but I didn't want to let the team down. By the way, I've just read one of your posts that said you had been advised to use Dermovate for only two weeks. Was that from Dr Harries?
Liz I think you are very brave to have the steroid injections into your scalp. I do hope this works for you. Dr Harries is clearly the expert on this condition so you are in excellent hands.

The steriod injections didnt hurt at all. Dr Harries told me that they can be uncomfortable and I braced myself for pain but they were not painful at all.I would be happy to have them all the way along next time.
x

Jules I am sorry you are feeling low. I am taking hydroxychloroquine but Dr Rajpar has said there is no guarantee it will halt my hair loss. It does seem to have worked for some women. I'm seeing Dr Rajpar agin in three months. Wish I could pack up work as my job is pretty stressful and I'm sure that's not helping. In fact it may well have been the trigger that set this thing off in the first place.
It is worrying that the steroid injections given to Celia and Rebecca have caused ridges and indentations but not actually helped reduce the hair loss.

Caro - I only used the dermovate lotion for 7 days in the end. Dr Harries did not prescribe it to me, another local dermatologist gave it to me, it was really only to stop any itching/redness if I had any - which I did not!!! Dr Harries did say that he has not found the dermovate to be effective for FFA.

I really don't like the thought of having permenant marks left by these steriod injections, my skin is nice and smooth where the hair has gone, it is not unsightly (although of course I would prefer it to be covered with hair), I wear a wide headband to the gym and for casual times and I intend to just wear a scarf tied up in a bow sometimes in the summer so I really don't want any marks appearing on my head. I think I might just stick to the hydroxychloroquine sulphate and give these injections a miss. I feel after reading your posts that they might cause more harm to my overall appearance than the hair loss.

Hi I have used Thymuskin,Stimulant serum,Actigener(scalp and body treatment,Flagyl,Protopic,Dermovat,Actos,Plaquenil,Metronidazol creme,Regaine forte nothing of this have workd for me.Doxoycycline workd for my forehed it was so swollen.But now the skin on the forehed is so thinn and if I go in the sun I have to use a sunscreen 50+ and wear scarf.I have lost 3,5cm of my hear on my forehed and my skin feel like it is burning on the forehed and the eyebrow.And I also have bald spots on top of my head.I hope my Englis is ok..

Caro, regarding the hydroxycloride and nausea. I also had stomach problems for about 2 weeks. Was eating only rice, chicken noodle soup, etc. But it did go completely away. However, I still always take it after a meal or with food.
I saw my demeratologist today and we both agreed that the hairloss has probably stopped (at least for now) and irritation is gone plus quite a few eyebrow hairs are growing back. Amazing! I've been taking it for about 4 months so it is worth a try.

Hi Rebecca the Doxoycycline workd on my swollen forehed but my hair is still fall off.And Yes it is Wonderful in Iceland.Ok and What is the writer name..And now I'm not on any medication...

Saw my Dermatologist today. She said things looked pretty mild for me today with the FFA and my rosacea. They now have the Excimer laser treatment. I forgot about the article someone posted on this treatment, so I didn't ask her to much about it. They have only had it a month or so I think. Currently it is used on the scalp for inflammatory skin conditions. She wants to try it on my eyebrows since my scalp is not that bad yet. Don't think it has been used on eyebrows yet. Very experimental. It is also very expensive - around $3000 per treatment,not covered by insurance and you have to go twice a week. Needless to say, I can not afford to do that. Plus I'm concerned about the safety of the laser so close to the eyes. You do have to wear goggles. I got steroid injections on my scalp and eyebrows. They are painful on the eyebrows, not to bad on the scalp. I get the indentations on my head, but so far none on the eyebrows. Not sure how long I will continue with the injections. I have been on doxyclycline a month now so to soon to tell if that is helping. I now am to use only the clobetasol foam the night before and night after I dye my hair. I also asked about diet. There is no scientific proof that shows diet helps with inflammatory skin issues. So nothing different recommended there except to try to eat healthy. Sigga - my husband and I were just talking the other day how we want to travel to Iceland. We hear it's a beautiful country. Judy - How do you know your hairloss has stopped? Have you had that happen before and then start up again?

Hi Celia, I have been thinking about eyebrow tattoos for a long time - but am a little nervous about it looking natural - or as natural as can be.
That is encouraging that yours have turned out well. I'm not going to say money isn't a factor - but I am willing to pay the price for a good job - I just have to find one in my area who is very good. How long have you had yours and have you had any touch ups?

Lorn - re eyebrows, Celia and I go to the same lady in Chertsey, Surrey. You get touch-ups approx every 18 months. The cost is £410.00 for people with medical conditions. You have a consultation first. Then go back for your first treatment, then a second treatment a month later. She is excellent, it does not hurt (some other practioners go too deep and it is painful) the healing process is really quick because she only works on the upper layers. I had my brows done by another practitioner before and she was not anywhere near as skilled.

Check out the website www.belindahayle.com and you can see photos of clients.

Judy, delighted that your hair loss has stopped, I have only just started on the hydroxychloquine. Can I ask please; are you using any other drugs?? also you posted a few months ago your Dr advised using probiotics every day, what are you taking ?? as I would like to also be proactive in safeguarding my health now I have an autoimmune condition. Ta xx

Ok Rebecca,Arnaldur and Yrsa they are really good writers.I have to but some more picturs so you can see how my hair has become...

I'm feeling rough. Im not sure if I've caught a bug or if it's the antibiotics or the steriod injections. Anyone else feel rough when they've taken Doxycycline and does it get better?
x

Lorn, that is funny, I just got it in my head your were in the UK too. The hairlike strokes that Simone has just posted are what my lady does too. Very realistic.

I have had very good results using Elidel (pimecrolimus) cream on my eyebrows. After about 6 months of use, they have almost completely grown back. It's quite expensive but the samples I got from my derm lasted a long time. I still use a light pencil/powder to fill the sparse areas but don't bother if I'm just going to the gym or something. I would recommend trying this before resorting to tattoos.

Hi Pam and all,
I feel just like you, Pam. . . one day I think I can manage all this, since activity around the follicles seems less "angry". Then I get relaxed for a bit. . . I just got back from Florida where I didn't think about it at all. Now today I notice my hairline at the top of my forward is red, itchy and more sparse. I was religious about applying the Minoxidil 2X daily for months and the hairloss kept progressing. So I reduced to 1X in the AM before styling my hair. I'm thinner at the top as well and I'm not convinced that it is helping. I keep it up as I'm afraid if I stop outright, then who knows what would happen. So for now I am taking Plaquenil 2X day, with Protopic at the hairline at night and Minoxidil most mornings.

I see less irritation at the temples, but the front hairline is still active. Yuck. . . my part seems OK and I had heard that FFA was just along the leading edges.

I used Nizoral shampoo for a few months as that is recommend for inflammation but I have now switched to a very gentle shampoo that some people on another alopecia support website were using : Faith In Nature, Seaweed shampoo. I got it off Amazon for less that £6.00 It feel nice after I wash my hair and it does not have any paraben or sles and is fragrence/colour free. I am washing my hair less, I used to wash it every day but now a couple of times a week. I dont use any hair dye or styling products at all, just shampoo and leave it to dry naturally. I am of course wearing wigs so I don't need to style my hair. Apart from my front hair line I am not losing hair or having any thinning on any other part of my scalp, although that of course doesn't mean that I wont get that in the future.

Debs you look great in your new picture. You look great in all the styles your trying, and you always have such a big smile on your face. Very encouraging for when that time comes for me. My Derm says to wash your hair every day to keep the follicles from clogging up. Which you don't want to happen with FFA. Shampoos/conditioners can leave residue on the scalp.