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New Spanish study into FFA
I am new to this site so hope that this post works - apologies to all if it goes wrong.
A bit of background on me first - I have recently been diagnosed with FFA, but have suffered from it for at least 3 years, although I didn't realise it. Initially I had severe burning and itching on my legs and only recently realised that most of the hair on them is now gone (I'm blond, so not immediately obvious). My eyebrows went about 2 1/2 years ago and again because I'm blond, they didn't look too bad so I didn't really pay much attention. It was only last summer that I realised my hairline had moved back nearly an inch and it has taken until a couple of months ago to get a diagnosis. Other than this I am fit and healthy do lots of exercise and all blood tests apart from the one noted below have been entirely normal.
I was fine with losing my hair on other parts of my body, but loss of my head hair is really stressing me out and reading this forum is one of the few things that keeps me sane. I like to have everything neatly ordered and just not knowing why this is happening or when it might stop is so infuriating. I am 46 years old and have a 5 year old daughter. I had a severe postpartum haemorrhage and was in surgery for quite a while to stop it. Since giving birth I have also been on two long courses of antibiotics - one for what the doc thought was rosacea (I now wonder if it is linked to FFA - unsightly lumps on my face) and one for pneumonia. So I have a few things in common with other members.
I don't think my dermatologist was really that interested and just prescribed dermovate cream. I did however ask about a possible hormone link as when my GP did all the initial blood tests she said that everything was fine but the ratio of some of my hormone levels was a bit unusual and symptomatic of polycystic ovary syndrome. I don't have any of the other symptoms of PCOS so this wasn't pursued. The burning on my scalp and eyebrows does seem much worse around the time of my period though and I wonder if there could be a link. I wondered if anyone else had investigated this possibility.
In my quest to find a reason I regularly trawl the internet and have just found an article about a study that has been done in Spain where in tests on 111 patients antiandrogen treatment (finasteride and dutasteride) resulted in improvement in 47% of patients and stabilisation in 53%. This seemed like pretty good results to me and I wondered if it is worth going back to my doc and asking about this or if anyone who is seeing some of the experts in this field already could ask about it.
The article is published in the Journal of the American Academy of Dermatology and is credited to Sergio Vano-Galvan and others. I hope this gives people enough info to find the article but will also try to attach two links if anyone wants to look at the headlines (you have to buy the article if you want to read the full text)
http://www.sciencedirect.com/science/article/pii/S0190962213013066
http://www.healio.com/dermatology/practice-management/news/online/%...
Apologies for such a long post but I'd be really interested to hear peoples thoughts and thank you so much for setting up this forum, knowing that I am not alone is really helping.
Replies to This Discussion
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Permalink Reply by Celia on
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Thank you and welcome to the site. Glad you have found this useful. I set this up well over ago in sheer desperation. You will find a lot of advice/info here. So sorry you have this. Keep communicating. I am convinced that anti-biotic treatment could be a trigger. Best wishes, C
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Permalink Reply by Anne Louise on
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Hi Maggie, I'm pretty new here myself, having just been diagnosed a month and a half ago. I feel like I live on the internet, reading about FFA whenever I can. Thanks for sharing those articles. I was struck by how they referred to mild vs. more severe FFA. I hadn't heard that there is a range of severity. If that is the case I am hoping perhaps I am on the mild end of the spectrum since my eyebrows went first. They were very thick and dark, so my appearance has changed drastically. : ( I'm looking for any bit of hope I can find!
I haven't had any itching or burning and haven't noticed any correlation with my cycle. I'm 46 as well and continue to have regular cycles.
I continue to have the hope that probiotics may be a big help in treating this, although not much research has been done in the use of probiotics to treat non-GI illnesses. Broad spectrum antibiotics, such as Amoxicillin, are notorious for wiping out the good flora in the GI tract, and it appears that many ladies here, like yourself, were on intense antibiotic treatment prior to their FFA diagnosis.| I did learn at a nurse conference last week that people with autoimmune diseases have lower levels of Lactobacillus, a key probiotic that functions in critical ways for the immune system; there are tons of different strains. I have also read (but now can't find the source!) that women in menopause tend to have lower levels of Lactobacillus. This leads me to wonder if broad spectrum antibiotics given in menopause could be a set up for FFA! And those of us not in menopause may already have a genetic predisposition that was set off by antibiotic treatment.
These are just personal theories of mine and perhaps simply out of a desperate attempt to explain this very bizarre disease. But who knows? Maybe I'm on to something. I read recently about a 56 year old woman who was a marathon runner and was diagnosed with two very rare diseases. She discovered her own cure! Everyone in the medical community told her the diseases were unrelated, but after tons of research she found a connection and now follows a strict diet that alleviates her symptoms. There is no one more motivated that the amazing ladies on this site, so why wouldn't it be us to find the cure for FFA?!
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Permalink Reply by Maggie on
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Anne
I've just written a long reply to Suzanne on this string about my recent visit to a Trichologist which gives some more information on my story so far and I thought that you would be interested that the Trichologist recommended probiotics - not just the nice yoghurt drink that I have been having but a tablet version of them which I presume is much more concentrated. I am going to seek these out and give them a go and will let you know how this gets on. Are you aware of any particular types that are recommended?
Best wishes, Maggie
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Hi Maggie, I still am such a newbie in the world of probiotics, but I do know that they are beneficial! I do believe we need more than what is in yogurt. For the probiotic to be effective it needs to survive the acid of the stomach and arrive in the intestines alive. Heat destroys them so they should never be stored in a warm place or taken with warm/hot drinks; I keep mine in the fridge. There are a million brands out there and I found it overwhelming sorting through them all, so in the end I went with Ultimate Flora Critical Care, which a few ladies on the site are taking. Each capsule contains 50 billion cfu's (colony forming units), which is a very high count, and they are delayed release so they survive they stomach's hydrochlororic acid. I hope that helps. I think I'll dig out a study and post here when I get a moment...since I couldn't ask Dr Goldberg about it, perhaps others here can show it to their derms.
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One more thing...the probiotic should always be taken separately from any antibiotics. I take my antibiotic at breakfast and dinner and the probiotic by itself at lunch. Food encourages the probiotic activity.
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Maggie, thanks for sharing this. The hormone link is interesting. I had wild hormone fluctuations leading up to my FFa. I had been on Tamoxifen for breast cancer from age 47 to 50. It had thrown me into early menopause. I stopped taking it and briefly seemed to come out of menopause and then went raging back into it. But I still think the antibiotic link is compelling. Did you by any chance take acid reducers, such as prilosec? I found out there is a link between omeprazole and lichen planus, which although is not exactly lichen planus pilaris, seems to be familial. I had been taking omeprazole daily for the year before dx.
MJ -
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Permalink Reply by Annie on
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Maggie, the concept of antibiotics at a critical stage of menopause is interesting. I had a bad ear infection a few years ago that required 3 rounds of antibiotics to treat. I remember dealing with the side effects of the antibiotics along with my perimenopausal hot flashes and thinking, "Could I be more miserable?"
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MJ, the speaker at the conference I attended was explaining how proton pump inhibitors, such as omeprazole, encourage an overgrowth of bad gut bacteria. This happens because the hydrochlororic acid in the stomach is decreased for 24 hours, which provides heartburn relief but can allow bacterial overgrowth. And the plot thickens...
I thought this article provides a good summary of probiotics and autoimmune disease. It contains links to several studies but concedes that more research needs to be done in this area. The article ends with questions to ask our doctors.
http://www.autoimmunemom.com/diet/probiotics-gut-bacteria-autoimmun... -
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Anne - we have a number of women now on this site. I know that Dr Christos is doing research, but I wonder if we might investigate this question of the link between the use of antibiotics and auto immune disease ? I'm not sure how many women now look at this - but perhaps there may be enough of us who still communicate for us to somehow put a picture together ?
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C
Firstly thank you for setting up this - it is by far the most helpful and sensible information I have got from anywhere about FFA so far and that includes my GP and dermatologist.
I would be willing to help getting information about histories together as there has to be some reason for all of this. The antibiotic link does seem to be cropping up again and again - it does seem too much of a coincidence for my liking! If only we could work out a way to reverse the damage that has been done. I have started taking probiotics recently, which seems to be backed up by what Anne said in her post - here's hoping.
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Thank you and welcome to the site. Glad you have found this useful. I set this up well over ago in sheer desperation. You will find a lot of advice/info here. So sorry you have this. Keep communicating. I am convinced that anti-biotic treatment could be a trigger. Best wishes, C