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Comment by PamW San Diego, CA, USA on April 6, 2013 at 10:09am

I visited Patti in her shop and she is very remarkable, and so calming. Caro send us a picture of you in your wig!

Comment by Caro UK on April 6, 2013 at 8:17am

That's really useful info Debs. Thanks! Will check out both sites.
Kath, good luck with your new wig. Mine is a lace front and synthetic so it's lighter than human hair. Even so, before it was cut it was too thick and felt heavy on my head. Probably because my own hair is so fine and thin it felt strange, like wearing a hat. Since it's been properly cut it feels a lot lighter and more comfortable. Re the chance of it blowing off in the wind (!) the stylist said I could have a clip sewn into the lining near the base to clip to my own hair at the back which would help me feel more secure when wearing it. She showed me what the clip looked like and where it would be attached. My hair has not been affected at the back of my head. Anyway, for now I've decided to try wearing it without having the clip and see how I get on. I went for synthetic hair because the colour will not fade when washed. It is a pretty good match for my own hairt, which is coloured anyway. Mine wig also be heat styled on a low heat, though I haven't tried that yet.
Really exited about having my eyebrows done (by Noveau Contour). Have to do a patch test first to make sure I have no reaction to the dyes used. I'm going to go for the hairstroke brows as I want a natural look and I have very fair skin so I don't want anything too dark which will not suit me.

Comment by Debs on April 6, 2013 at 6:20am

www.wigsupport.com

I use this website to get info on my wig wearing. A support group of fab ladies that know everything there is to know re wigs. They are great fun and very very kind.

Also PATTI'S PEARLS is a lady that sells wigs and has posted several great videos on her online shop showing how to wash, put on and style a wig. She is a cancer survivor and really inspirational.

And, NO it won't blow off in the wind.

Enjoy your new hairdo Caro.

Comment by Chrisy, MA USA on April 5, 2013 at 11:54pm

Hi everyone! I'm reading a lot about this disease and still have questions. Why the eyebrow hair fall and come back again but the scalp hair once it falls the follicle dies and never comes back again. I find it weird. Also is there a possibility of hair transplant once the inflammation goes away?? Lastly If the plaquenil work for you why would you stop it? I would be afraid to stop taking it in case the shredding start again and then I have to wait for couple of months before kicks in again. One more... how often can you do the injections?? So confused.....

Comment by Kath UK on April 5, 2013 at 6:40pm

Pam, thank you very much for all your information. My dermatologist says she will prescribe plaquenil for me when I next see her so I am glad to hear as much as possible about other people's experience of taking this medication. I intend to ask my dermatologist how many people she has prescribed plaquenil for FFA and what the success rate has been. Good luck with your treatment!
Caro, it was good to hear about your first experience as a wig wearer. I'm getting my first wig next week and I feel a bit apprehensive. I was worried about the possibility of it blowing off on a windy day but you said yours stayed on ok. It does feel like finally accepting that I need to wear a wig is a big step but what you experienced seems reassuring. Thanks for sharing. I bet you felt nervous stepping out to the shops wearing one for the first time. I'm sure nobody noticed and you looked great, though. Did you wear a full wig or a hair piece? How comfortable was it?

Comment by Caro UK on April 5, 2013 at 4:54pm

Hi everyone, Ive been keeping up to date with recent posts. All very informative. Glad to say I have not had any stomach irritation since I changed from the generic hydroxychloroquine to Planquenil.
Hi Ellen, interesting that you have Rosacea and eczema, both of which I suffer from. I also have Vitiligo.
I can't style my hair properly any more so I've bought a wig and I had it cut yesterday. Then I wore it to the shops. I was very nervous and kept checking myself whenever I came across a mirror! No-one gave me any funny looks so I guess it looked OK. It was very windy out and I was really worried it would blow off! Managed to get back to the car without misshap! Fed up with spending ages trying to pencil in my eyebrows to make them look natural. As luck would have it, there is someone local to me who is an expert in semi-permanent makeup so I'm going to take the plunge and have eyebrow micropigmentation. I've booked an appointment for next week.

Comment by PamW San Diego, CA, USA on April 5, 2013 at 12:59pm

Just saw my specialist at UCSD, who reiterated that plaquenil is the safest of the immunosuppressants to use for the treatment of the disease. He said that most people who take it, stabilize over time. He does not see people have remission for the disease. He did say to be careful with the clobetasol to be checked for hair thinning. He did see inflammation on my scalp and said there could be inflammation under the skin as well. He also thought using minoxidyl for women was worth a try. He did say that studies have shown that the women's strength was just as effective as the men's strength but had less of the side effects that can occur from this product. He took pics again and I have to go back in 3 months, so I guess things are status quo for me. He also wants me to have my eyes checked because I am on the Plaquenil. I asked about the excimer laser and he said that it has helped people with other skin diseases such as vitiligo, but he said it wouldn't help me. he also said that he expects that someone will find a cure in the next ten years, and that he was going to try to find out if anyone is working on a topical cream with the active ingredients that are in Actos. He still worries about prescribing Actos because it can cause congestive heart failure and because there is no proof that it works. He said stress doesn't help us and stressing over our hair, obviously, isn't good. He said that sometimes support groups are good and sometimes it can make things worse because they can make us more aware and worried. He suggests keeping busy and trying to put it on the back burner. I apologize for the length of this post, but I know we all look forward to hearing news.

Comment by Debs on April 4, 2013 at 3:21am

SAMMI - as you have been seeing Dr Harries for 2 years you are well ahead of the rest of us in the UK that having only been seeing him for a few months... Can I please ask you to post what treatment you have received ? and any side effects and whether it worked ? Any info we share with each other really helps us to make informed decisions about what we are prepared to try. Thanks you.

Comment by AC from CA, USA on April 3, 2013 at 7:39pm

Hi Pam,

I'm waiting to see Dr. Mirmirani, who works for Kaiser Permanente in their northern California medical offices. She is located at their Vallejo facility. She currently has a huge backlog of Kaiser patient referrals...I'm told it may take her office four to six months to schedule my appointment. I've been waiting since January. :(

Aimee (AC)

Comment by PamW San Diego, CA, USA on April 3, 2013 at 7:30pm

Hi, Paula. I am not a doctor (only a grade school teacher), but my understanding is that we all have LPP. FFA is a type of LPP in that the hair loss follows a pattern. FFA is characterized by hair loss at the front hair line, temple and nape of neck. It is a band of hair loss and is common in post menopausal women. Women also lose their eyebrows and other body hair (underarm, forearms and legs). I have had two sisters take prednisone and I know from their experience, it can cause hair loss, so if you feel that you are losing a lot of hair it could be because of that drug. You might want to get back to your doctor and tell them what you are experiencing. The drug, Plaquenil, that I am on, takes almost 6 months before people can tell if it is working or not. In the meantime, my doctor prescribed an antibiotic, doxycycline, that helps to reduce inflammation, which also helps with skin conditions like rosacea. My scalp is still inflammed and I have been taking plaquenil for 8 months. I am going to my specialist on Friday, and I am going to ask if there is something else out there for me.

Celia, don't apologize for having a bad day. We all know how you feel.

Ellen, where is Dr. M in California?

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