Comment

Comment by PamW San Diego, CA, USA on July 9, 2013 at 2:34pm

http://http://www.carfintl.org/_articles/drugs-in-dermatology-2012.pdf

Annie and Rebecca, I am attaching the recommendations from CARF about the drugs that are recommended for FFA. I have actually taken this document with me to my dermatologist, who really appreciated it because I am the only one that she has ever treated with this disease. The specialist that I see from UCSD is also aware of these guidelines. Doctors do prescribe immunosuppressant's and they usually work but the disease usually returns after stopping.

Rebecca, prednisone is prescribed for the disease as a bridge until the plaquenil has a chance to begin working. My sister has to take this drug for her autoimmune disease and I know that there are many unpleasant side effects (the least of which is hair loss!) So, I guess we are all going to have to pick our poison based on how much we can all tolerate in terms of our hair loss vs. risk.

There are new biological drugs available now that people with arthritis, psoriasis, and Crohn's disease take - like Humera and a few others that I see on TV all the time. I am just wondering if these would be a possibility for us.

Comment by Annie on July 9, 2013 at 1:50pm

Pam W, I have also been researching immunosuppressant drugs so I can make an informed decision if the Plaquenil/Clobatesol combination doesn't work. From what I've read, the immunosuppressants work by keeping your body from attacking your hair follicles instead of just treating the inflammation. I can't imagine a doctor prescribing immunosuppressants with all the possible side effects. I've seen three different dermatologists since being diagnosed in mid March. All three recommended starting with a topical steroid only. It took a lot of convincing on my part to even get a prescription for Plaquenil.

Comment by PamW San Diego, CA, USA on July 9, 2013 at 11:53am

I have had redness on my cheeks and the bridge of my nose. I thought it was rosacea, but I think it is related to the FFA. My derm said the doxy would help with that. Also, my scalp is itchy at the nape of my neck and around my ears. I see redness in the center part. The redness and the itch are the signs of inflammation, and is how we know the disease is still active. The hair loss is the end result of the inflammation. The hair drops out because the follicle scars over to protect itself from the assault of what is attacking our sebaceous glands.

I also want to comment about the recent posts about the meds that work or not. It is true that the doctors are not sure about what works or not and whether or not anything can really stop this disease. However, there is a protocol of what they try. If after 3 to 4 months Plaquenil is not working, there are other drugs to be used, such as immunosuppressants, which come with greater side effects, but have a high success rate. Doctors like to exhaust all the possibilities before trying these meds.

Recently I saw a copy of Dr. Harries presentation that he gave at a conference in Scotland about FFA. In the notes he made mention of a topical form of Actos, but Liz, Debs, Jules and Celia have not mentioned him prescribing this drug. He does mention the finasteride, but that it takes a long treatment time, and I believe this drug is intended to help with possible hair growth and not the cause of the inflammation. I am interested in the topical Actos because that is a drug that can stop the inflammation, which is causing the itchiness and hair loss.

Also, there is some mention that our disease could be connected to an environmental agent such as dioxin, which can be found in animal feed and polluted areas. I just think that autoimmune disease is a result of many different factors such as genetics, environment, stress, etc (just like cancer). There is not just one cause and not one thing will cure us until they can find the gene that gets triggered to cause the inflammation.

My clobetasol is a foam and it is much easier to direct to itchy areas. My doctor told me to be careful about applying it near the face because it will cause the skin to thin. I only use it when I am itchy.

All of the derms say that diet does not play a role in our disease, but many, many people with LPP and FFA would differ with them. I have been gluten free for almost a year, try to avoid sugar and dairy. I don't know why, I guess I am just desperate to save my hair and be free of the constant discomfort that my scalp causes.

I know people say that it is only hair and it doesn't matter. It matters to me and I am not going to apologize any more for being so upset about it. This disease has greatly affected the quality of my life, my confidence and my self esteem. Yes, there are worse things, but this is bad.

Comment by Celia on July 9, 2013 at 11:32am

Ladies - do not worry unduly about thinning skin. Focus more on thinning hair !
I get facial inflammation from time to time and this is connected with the condition. Usually this is around the hairline on my forehead.Apart from the physical probs - is there anyone out there who is able to wake up and not think instantly about FFA ? Certainly the dermatologists don't have the answer to this either ! Interestingly enough.............the first derm I saw in Dubai had thinning hair - used rogaine....the trichologist I saw there also suggested he could do hair transplant....not an option with FFA, and the next trichologist I saw in UK was also displaying male pattern hairloss. I wondered whether this could be contagious.

Only joking !
I hope that those of you in UK are enjoying the lovely weather.
x

Comment by Rita - Canada on July 9, 2013 at 9:04am

my doc recently told me to use the topical clobetasol l week on 1 week off as she referred to the thinning at my frontal scalp as atrophied. I only apply it sparingly to scalp and experience some itchiness through the day. My doc, however, said to sprinkle it on and work through (not happening).

Comment by Chrisy, MA USA on July 9, 2013 at 8:44am

Hey!! How common is it to get itchy scalp with FFA? I had never experience itchiness in my scalp but for years now my neck is very itchy in times. Lately my face too. Just wondering if this is related somehow. Also, does anyone else see inflammation on the face. It looks like a rash, very tiny inflamed skin. I remember having this for a while now before even the hair started shredding. I stopped the topical steroids on the eyebrows and scalp. I am just hoping that with time the skin thinning will restore back. If anyone experienced this how long it usually takes?? Thank you all!

Comment by April on July 8, 2013 at 10:41pm

Chrisy, my dermatologist referred me for the xtrac. I have been reading all of your comments and I thought I would add that my dermatologist told me that he only has three patients with this type of hair loss, another woman, and a 17 year old boy if you can believe it. He was pretty up front about the fact that nothing has worked for his other female patient and she has tried everything.
I think the xtrac is experimental for FFA but derm said it has worked for LP of the skin. Also, I am on day 3 of eliminating all grains, sugar and processed foods from my diet. My reasons for trying this go beyond FFA as I have been suffering from a host of other symptoms and problems and I'm hoping this will help. I will say that my scalped hasnt itched at all today. Three days isn't enough to know for sure but maybe I am on to something... Talk to everyone soon: )

Comment by Rita - Canada on July 8, 2013 at 5:33pm

Celia, she said the same thing roughly 50% success but didn't look convincing. I think we're guinea pigs but then no meaningful research has been done and so the derms can only guess at what to suggest and most likely tend to exaggerate the positive outcome. Perhaps our own research will point out the factors we all have in common. We'd have to come up with a comprehensive questionaire. Those that were comfortable with taking part may well learn what that something is which the researchers have not found. Yes I know it's a pipe dream as even if we found the common element assuming it's not inflammation,the question remains-how to fix it.

Comment by Kath UK on July 8, 2013 at 4:58pm

Celia - couldn't agree more with what you're saying. Personally I think the bottom line is that none of the specialists really have much idea what causes FFA and what will cure it and they're just trying out anything that they think might work.
I asked my dermatologist what sort of success rate she had with Hydroxychloroquine because I was reluctant to take it. I felt her reply was a bit vague - she said she had 'something over 50% success'.
As I understand it the Clobetasol is simply to reduce inflammation and the theory is that if there's no inflammation then the hair follicles won't be destroyed. Well I've been using Clobetasol (Deermovate) for over three years and my hair is still disappearing and the inflammation is still there. (Sigh!)

Comment by Celia on July 8, 2013 at 4:18pm

Rita - you said you were told to apply Clob. and take Doxy. Have you asked your derm about the stats regarding the success rate on this regime ? I wonder if they have any ?
Karen you are absolutely right ! What is it with these experts - that they cannot understand some fairly fundamental facts ?
I was told by Dr Harries - that my FFA may be 'different' to another person's, Oh dear. So - totally confused !
I think it is about time that we acquaint the experts with some facts that we 'sufferers' have gathered ! x

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