Celia- Its a shame I don't live nearer, I would love to meet up! Can you tell me what is Protopic and why you have to wash your hair every day?

I don't know how to, but I wouldn't mind skyping!

Jules - good luck with Dr Harries today. I will be thinking of you.
Barbara - welcome to the group. XXX

Chris, I think it is. I don't see hair all over the place anymore, the redness is down and itching and burning only occurs if I don't eat right. I am taking 15 mg per day. Let me know what you decide!

Another gal on another board says it helped her and she started noticing the difference after being on the drug for about 4 weeks. I am on for a little over 20 days. She says she sees regrowth -- I always thought regrowth was impossible. I will be happy if things don't get worse.

Actos is actually a diabetic drug that changes the way your body metabolizes carbs. The research is showing that toxic lipids are attacking the sebaceous glands which are located near our hair follicles. The toxic lipids are a byproduct of the way we metabolize. There is a gene called PPAR(g) which is turned off in LPP and FFA patients. The Actos turns the gene back on. Actos is the brand name but the generic name is something like Piglatezone. Actos has been known to cause bladder cancer and heart problems in patients who have taken it for a long time and at high dosages, so doctors are reluctant to prescribe it. My doctors gave me the ok because I would take it for a few months only and at a very low dose. I have been reluctant to comment because I don't want to give people false hope. However, I have noticed a difference in the amount of hair that I have shed. Also my scalp is less bothered. My bad days are when I eat gluten. I was on Doxy for three to 4 months and went off because the specialist I saw didn't think it was going to make a difference. It does have anti-inflammatory properties so derms prescribe it because they want to keep the inflammation down. inflammation is what causes our hair follicle to let go of the hair and eventually scar over to protect itself. Actos has been the only drug that has been shown to stop the hair loss. There is a doctor, Dr. Vera Price, out of the University of San Francisco who has done a lot of research for CARF and they found out about Actos. It is not the "standard" in treatment because there hasn't been enough research.

Hallo everyone. Sorry I havent been on much. I hope that everyone had a good Christmas. I popped to my Gp this morning who says that she'll refer me to Dr Harries so hurrah for that :o)I'm now thinking of having a fringe which I havent had for about 25 years.Hopefully I have enough hair to make one! xx

Yippee... my letter came yesterday, I have an appointment with Dr Harries on 22 Feb. Celia, a quick question... on my letter it says I have an appointment with Dr Harries team - did your letter read like that, I just wondered if I am seeing the man himself or one of his colleagues? I live near London so I am going to fly to Manchester and the hospital is 15 miles from the airport so I will take a cab, I considered driving up but don't really fancy such a long drive there. Pam, appreciate your explanation of Actos and the process of why/how we are losing our hair and the PPAR gene.

Hi Pam and everyone. . .I haven't been posting much. The Holidaze had me going and work has been crazy. The good thing is that I don't tend to think too much about FFA. I had a check-in with Dr. Barbosa. I had a first appt. with her back in September. She promptly took me off Clobetasol steroid and substituted Protopic topical ointment for reducing redness. Also started my on Plaquenil 200mg 1X per day as well as Biotin 5000 mcg, Iron 325, Vit D3 1000 IU. I was continuing with 1.25 of Finestride from my previous doc. My scalp/skin condition is definitely improved with less redness but the shedding continues. So I was looking to try something else. I wanted her opinion of Actos. She wanted to increase the Plaquenil to 200 mg 2X/day before going on the Actos. She said that she wanted to try this course of treatment for alittle longer with an increased dose instead of switching it up. I had heard good things about Actos but she warned that it would need to be a temporary treatment measure of no more than 4-6 months, that there was not enough documentation out there to feel comfortable with long-term useage, also that there is some risk of congestive heart failure and swelling/fluid retention. She said that if I was not experiencing a slowing of symptoms by my next appt. she would consider it. Then she said that in her experience FFA usually takes 1-3 inches and stops. . . that it seems to claim as much of the hairline as it is going to claim regardless of what we do. I'm pretty depressed about this as she is very knowledgeable and pretty active in CARF. Similar to the stories that CJ heard with the symposium in Canada. The PPAR receptors and the sebaceous glands is where the new research is but the studies are still mouse studies and hair is such a complex issue. Look at all the bald men out there who would rather have hair—a huge market yet all we have is minoxidil. I'm still applying that once per day. So for now I have an increased dose of 200 mg Plaquenil 2X per day and Protopic at night and Minoxidil in the morning. She took me off the finestride as she doubts it is doing anything. If my hair all drops off, we'll know that that was the thing that was keeping it on my head!! I was complaining about how greasy Protopic is and she gave some samples of Eledel cream to try. Also the Protopic is so expensive—like $300/small tube. So that is where my meds are at the moment. I wish I could report some new break-through. I'm very curious about the Actos since it seems like it goes to the "root" of the problem. Keep us posted Pam.

Hello everyone, I am a 63 year old woman who was diagnosed with frontal scarring alopecia at the end of November. I'm using topical treatments, had a round of injections and am taking an anti-inflammatory pill. I am located in Ottawa ON and would be interested in contact with other alopecians in my area to share experiences and obtain advice.

Hi, Janice. Welcome to the group. I think you will find a lot of support from this group. One of our members, CJ, is from Canada and she may be able to help you locate a support group. Good luck to you!

What is the Plaquenil suppose to do? Is it suppose to relieve the itching and inflammation? I was also offered Methotrexate, has anyone tried that? I only take doxycycline right now 40 mg. It has relieved the itching, still have hair loss though. I am hesitant to take the Plaquenil unless it will regrow my hair. I'm scared of the side effects, since I feel a drug started all my problems. I read that LP can be triggered by chemical reaction or stress. Anyway my New's Year Resolution is to try to wear my wigs in public more. It's funny I wear them to work every day and I don't think twice about it, but anywhere else I get apprehensive. What is the big deal, it's only a wig. I worked in Oncology for ten years and everyone wore wigs and at that time I never thought one thing about the ladies wearing them. Did not cross my mind that OMG she is wearing a wig! I wish I had that mindset for myself. Anyway I ordered 2 wigs this weekend and I picked something out of the ordinary. If I'm going to wear wigs, I might as well make it fun. Happy New Year and God Bless!

Happy New Year to all of you ladies. Goodness Celia, this is getting very confusing, as you know I see Dr Harries on the 22 Feb, so we can all compare notes. I thought that since the plaquenil is an old drug (I believe it has been around since the 1970s) it would be cheap and there would not be any issues with health authorities prescribing it. I assume it is a cost issue if it is prescribed by some NHS trusts and not others....

Happy new year everyone hope you all had a lovely xmas, I did! we saw family and friends, eat and drank far too much but back to reality I start work at 8.30am so i shall be quick!!Celia I'm really surprised that you can't get the medication, it was the first thing I was given without having to take any bloods. I do have blood test now, every few months to check liver and kidney function since being on the drug, I'm waiting to hear now from my last blood test before xmas. Everything upto now has been fine, touch wood, I don't want to tempt fate by saying anything to positive !! This FFA is so confusing, is the doxycycline a similar drug to the hydroxy. I think my hair loss has slowed down but it is still going at the front. I don't know how long I can go on the hydroxychloride if there is a time limit or not I will find out in Feb when I see my dermolologist. It would have been nice to start the new year with a positive but here we go a again, it is a complex problem we are all suffering with, keep your chin up we will get through this!

Did a facebook page get set up? I wasn't able to find it.

I am new to this group and haven't been able to read through everything yet with the holidays, etc. I'm hesitant to put much on here since anyone who goes on this website can see what your writing. I did want to let everyone know that the University of Minnesota Derm Dept is trying to get a study going on FFA. They apparently see quite a few patients there including me. I will let my Dr know of this website and let you know when I hear more about the study. It will be by invite only that you can join. It may be a couple years down the road. I thought it would be interesting to start a page with just a list of questions that we would all like to ask each other. This might help to find our common link and help when a study does come along. I know I have alot of questions I'd like to ask to see if we have anything in common. Like - exposure to pesticides/herbicides.

Just went back and looked at some notes from my apts. I think the study on FFA at the U of MN has been approved, but had to go through a reviewal process. So not sure how long that will take. Also has anyone gotten a SKIN allergy test done? I have had the typical allergy test done but not one specifically for skin.

PJ, there is a group on Facebook called "Frontal Fibrosing Alopecia" that was created by Liz Coleman. You have to request to be a member I believe. There are quite a few postings on it. Also I live in Iowa and would participate in a study if there is one. It would be nice to see if there are more factors we all have in common.

When I search that it just comes up with a wikipedia looking site and there's alot of Liz Colemans on facebook. Sorry I keep posting but I have so many questions. I've seen some comments on getting eyebrow tattoos. How do you go about looking for someone to do that? Tattoo shop? Any negatives to doing that? Safety, etc.

Hi PJ, welcome to the group. It's good to know that some research could be going ahead. I'd love to participat but the UK is a bit far! I'm planning to have eyebrow tattoos done soon. From what I've seen, you certainly get what you pay for - I've seen some terrible results. So I'm going to use a wig shop that specialises in customers with alopecia / undergoing chemo. The cost is high - £400ish, but hopefully worth it. I think if you use a reputable place, you should be OK re safety / cleanliness / results. Ask to see photos of previous work perhaps.

Hi everyone and Happy New Year!! I have been out of touch for several weeks and enjoyed reading all the interesting posts. I have my 2nd appointment with dermatologist Monday and have so many questions this time.
I, too, was initially scared to take the Plaque(Hydroxycloriquine) but learned much more, from this site and from doctors.. I had an appointment with eye doctor this week and he said that eye problems rarely are seen until very long use. Hope we all won't be on it forever!!! He gave me a chart/grid that I am supposed to look at every day to make sure the lines are straight, not wavy.
One of the questions I have for the dermatologist is about the
autoimmune disease part - what do they know. I have a feeling that
stress is a big factor, at least for me. Anyone else?
Also curious about the red spot/rash between the eyebrows. I know a few of you also have that.

Celia, I feel for you with the septic. I have one, a very old one, also and it is a huge fear that the darn thing will flood.
Good luck.
Pam and Lacy - I am in San Diego for only a week. But I plan to be back in mid February - look forward to meeting w/you.

Pam, thanks! Actually I think my hair loss has slowed also and I think I have several new hairs sprouting on eyebrows - possible?? Maybe it is this COLD weather? I will let you know if anything interesting at apt tomorrow.

Hi Celia. I shall write or phone and ask to be included in the research x

Will you ask if we can all access and fill it in online or shall I phone and ask for one individually? x

Hi, I too received one of Dr Harries' questionnaires today. The last question made me go cold - do you regularly use a computer screen? I've been an ICT trainer/ teacher since 1982! Of course, I know at this stage it means nothing but .......
Celia - thanks for the info re eyebrow tattoos. I'll look into it, but Surrey is a long way for me.
Hairloss is getting quite bad at the moment. Whether this is linked to using Protopic and Doxy... i don't know. Has anyone noticed improvement with any medication?

Hi all,
I'd love to participate. Do you have an email address for your Dr. Harries??? I just filled in one for Dr. Donovan here in Canada and let him know that if he wants we can put it online and get all of you to fill it in too. so far, no response. It would be good if they pooled their responses/data.

Hi Jules. I was losing a lot of hair. I then took 5 weeks of prenisolone and doxycycline. I was prescribed 8 weeks but stopped at the 5. Now my hair loss is minimal. Not sure if it was due to the medication or it would have happened anyway but I have lost lots this year and the slow down conincided with the medication, after taking it for those 5 weeks it slwed right down x

Hi Celia, fantastic news about the survey, I will definately take part. Jules, I am computer literate but I rarely have to use a computer of any kind in my job. So I can say with certainty that I have not got FFA as a result of using technology. Please don't think that you have contributed to having FFA by your career choice. I was told by my derm that it may be chemicals used in shampoos and hair dyes etc.. the bottom line is the doctors don't know, it may well be a combiniation of things and an inherited predisposion to be sensitive to certain chemicals... if the doctors in the UK and Canada can pool their data that will give them a much better chance to find out what the triggers are. At least some research is being done.

Hi Liz, Just wondered why you stopped the meds after 5 weeks rather than carrying on for 8? I'm tempted to stop everything to see if hairloss slows, but I'm aware that it can take a while for their effect to kick in. It's so hard when you know that every hair lost is gone for good!
Debs, you're quite right about the shampoos etc. The questonnaire asks detailed questions about skin and hair care products. I'm trying to remember what I've been using over the years I've had this. I'm hardly brand loyal! But this questionnaire is a good start.... and I'm grateful to be involved.

Hi everyone, great news about the survey, I will ring Dr Harries for a copy if we can't get a downloaded version. I'm a bit concerned about the different messages we have been given re our meds. Liz has only been given 8 weeks supply I've been taking hydroxychloroquine since May which is over 36 weeks!! My hair lose has slowed down and I have my bloods tested every few months everything has been clear so far. But a bit worrying why has Liz only been given 8 weeks!

Hi. I stopped the meds because I was annoyed with my doctor. I saw him in September 2012 and was in his office for no longer than 15 minutes. He gave me 8 weeks worth of medication and when I had my next appointment through the post it is for June this year so as far as I am concerned how can he decide if the medication had any effect at all on my hairloss. I also went on his website where he says that 'Follow up consultations often take just as long as the initial appointment and I believe patients need time to have the diagnosis explained and to go through the different treatment options. This high level of service would be compromised by trying to carry out the consultation in 10 or 15 minutes to keep costs down.' This was for his private patients. He obviously feels that the care of those who do not pay can be compromised!. So I will have nothing else to do with him or his medication xx