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Comment by Michjo57 on January 1, 2013 at 11:20am

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!

Comment by PamW San Diego, CA, USA on December 30, 2012 at 3:26pm

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!

Comment by janice mortensen on December 30, 2012 at 3:07pm

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.

Comment by PamW San Diego, CA, USA on December 30, 2012 at 12:32am

Chris, thanks so much for sharing your information. I promise to keep you all updated on my progress with Actos. I take 200 mg of Plaquenil twice a day as well as the Actos. I am interested in the new ointment you are trying. Also do you notice any changes connected to your diet?

Comment by ChrisC. Chicago, IL on December 29, 2012 at 11:45pm

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.

Comment by sam on December 29, 2012 at 7:26am

Hi im just wondering if anyone had or is using minoxidol iv been using ut for two months now and also taking saw palmetto tablets and have lazer treatment and my hair loss had gone 5 times worse it is coming out rapid it's scarying me now

Comment by Debs on December 29, 2012 at 3:44am

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.

Comment by PamW San Diego, CA, USA on December 28, 2012 at 10:45pm

Chris, how did it go at the doctor's? Any new info?

Comment by Liz on December 28, 2012 at 2:04pm

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

Comment by PamW San Diego, CA, USA on December 28, 2012 at 11:48am

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.

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