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What does really help? Regular medicines of alternative therapy?
Hi there,
I'm new on the forum; I'm a Dutch woman and have FFA since 2014, but officially diagnosed in april 2015. I already lost quite some hear around the face, but still can hide it quite good (not totally..) with the rest of my hair. I searched through the internet to find all kind of information about FFA.
What I'm most curious about, is that sometimes I read articles about the disease stopping after a few months of medication. But most of the time I read that people are suffering FFA for many years and using medications that don't really help. Also I read that doctors are not sure if medication will help, or if the disease extinguishes by itself. So...what's true?
And did anyone try to use alternative therapy with succes? That means diets, anti-inflammation food (like kurkuma etc.), acupuncture, osteopathy, or even other creams to put on the head?
My derm gave me Topicorte coisteroide cream and Placquenil tablets. I hate to put on the cream, it's the same as thick Nivea-crème. I have to use it every day, so I need to wash my hair about 3 times every morning to get it out...
I refuse to be negative about the situation, so I decided to be positive and keep on looking for the best treatment. But what's best?
My derm told me not to spoil to much money and time on alternative therapy which won't help, but..does regular therapy help?
I'm very curious about your opinion!
Replies to This Discussion
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Permalink Reply by Isabel on
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Hi there SmileNL
welcome to a group we'd prefer not to be in, but where you'll find lots of understanding ladies!
You should should contact Debs (http://www.alopeciaworld.com/profile/Debs?xg_source=profiles_member...) for her fact sheet on FFA. It may give you additional information.
My experience with alternative therapies involves acupuncture. I really don't know whether it helped me or not, but my FFA's inflamatory process went rather fast in the first few months, but seems to be stable. I am fortunate to have curly hair and, as I always had plenty of it, I can still hide the loss.
I think that even if acupuncture doesn't help you, it won't hurt for sure and has no adverse side-effects. On the positive side, it does contribute to fight stress and keep you more relaxed and serene,so if you can, you don't stand to lose anything by trying it out.
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Permalink Reply by DragonandFox on
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Hi SmileNL.
Sorry about your diagnosis. :(.
At 53 yrs old, I've always been very into alternative healing as a 1st choice or supplemental. My Dermatologist a man younger than myself, who I trust thoroughly but has never had any personal connection to my affinity for alternative medicine, shared with me in early 2014 that The Journal of American Dermatology Medicine (or whatever it is called) came out with a study that definitively says acupuncture in conjunction with traditional medicine helps improve regrowth in subjects suffering Alopecia. He told me there was nothing on People with Frontal Fibrosing Alopecia because they have yet to do research on subjects with FFA, but he wanted me to go forth & do it. :)
The issue with FFA that sets it apart from other forms of Alopecia is the level of inflammation in our bodies! Acupuncture helps with that.
Besides doing acupuncture, I've started lymphatic drainage massage which has been noted as essential with people suffering auto-immune diseases. The Lymph nodes are where all the toxins go & if they're not draining properly mayhem ensues. also, I eliminated the retinoid cream I've been using nightly for 7 (freakin) years (I look younger than my years, tho I may have paid dearly for it), I'm trying to eliminate stress(which causes inflammation) and I'm seeing a new Dermatologist who specializes in hair disorders and told me Columbia University is going to start research as soon as they get funding.
This sucks for us, but good news for our disease!
I suggest you find a good acupuncturist and quite frankly, do some research on a more in tuned dermatologist. I don't mean to. E negative
I love my acupuncturists! -
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I've moved form my phone to my computer but I've been locked out of editing on that post so....
Also, Dr B of Columbia U research team has put me on finasteride. She says they've had a lot of success with this drug. She told me there's another drug that works even better but Big Pharma is charging $2,000.00 a month to use it on FFA patients!! So, if anyone has that money, go for it, it's almost guaranteed to be a cure.
as for my near last sentence "I don't mean to. E negative" I mean to say, SmilesNL;
I don't mean to be negative but The Netherlands is a progressive country and I believe you need to worry about your needs and what's best for you and a Dermatologist who shirks off acupuncture is one who is not in-tuned with the holistic healing/treatment and people with FFA need ALL the nurturing they can get!!
Any Dr who would be insulted or annoyed by a 2nd opinion or puts their own ego in front of your well being, is not a good Dr and most definitely not good for a person with FFA. It's not JUST about the hair loss in FFA! It's very much about the inflammation and STRESS causes inflammation.
I created a chart in the thread about lack of studies. I urge you and anyone reading this to fill it out. As soon as My Dr's team gets funding she told me she'd take my chart but I really need more people to fill it out.
I believe Stress is a strong part of this disease.
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Permalink Reply by SmileNL on
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Hi Dragon & Fox,
I haven't been on the site for quite some time. And I must say, it still confuses me. I see everybody writing about their different medications, but no one reports real good results. So that's why I don't want to take medications because of their side effects. Even my derm tells me that they don't know. They have some patients taking Placquenil with results, but they say that it probably was a result of spontaneous stop of FFA.
What they tell is that it's part of your genes to develop an auto immune disease and that stress triggers it. So stress is certainly not ok!
I will fill in your form :-). Tnx!
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Hi Dragon & Fox,
your post was really informative! Since I suffer from both, alopecia areata and ffa, I am very interested into JAK-inhibitors like tofacitinib ('Jakafi') regarding their potential to maybe adress both diseases (Jak inhibiors are the thing right now for areata-sufferers). This is why what you said about Dr. B from Columbia (-->Dr. Bordone?) really sparked my interest: Is it possible that she was talking about a JAK inhibitor when she was referring to the new expensive drug?
Given that I'm only in my mid-twenties my doctor won't even consider prescribing finasteride to me due to its teratogenic potential :( so this is really something I would be happy to hear more about from you!
Wishing you the best with the finasteride-regimen!
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Can you tell me more about how your acupuncturist treats the issue, i.e. Needling inthe scalp or otherwise. I am new to ffa but have had religiously routine acupuncture for many years. My acupuncturist has never dealt with for but is looking into it. Thank you for sharing and best of luck.
I am sorry to read all this as a new person...the long struggle. I too have read about imminent burn out as soon as two years but I am not seeing any stories to support. -
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Kathy, my a Chinese doctor did put needles in the scalp and in many other areas. She assessed that my Kidney function was low and was working on my immune system as well. I no longer go because of cost and location but I am going to check into a new place close to home that might be a bit less pricey. I really liked my Chinese doctor. She was a fifth generation acupuncturist. Coincidentally the year I did acupuncture I had no seasonal allergies which I have had my whole life.
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Smile,
Read through old posts and you will see a lot of info about diet and alternative med that many have tried. Also, look at alternative topical so because there are better, less gooey options. I was first prescribed Clobetasol lotion and it was so messy and difficult to use but once I switched to Clobetasol solution it made a world of difference. I can apply it in the morning either before styling my hair or even when it is dry with no problems. Doesn't get my hair wet or sticky at all. I don't wash my hair every morning either.
Stay positiveM
MJ -
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I was first prescribed Clobetasol shampoo which cost $112USD for a small bottle. I quickly switched to Clobetasol foam which I apply at night and can comb my hair in the morning with no need to shampoo. Best of all it's more in the $30 range and last 2-3 months. Since my inflammation seems to have subsided I now alternate nights of Clobetasol and Rogaine foam for women. The Rogaine won't regrow hair in the scarred follicles, but it's helping minimize the overall thinning in my hair.
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hallo SmileNL
Kwam je mail tegen en ben erg benieuwd hoe het nu met de FFA gaat.
Ik heb het ontdekt augustus 2014. Tot nu toe gebruik ik geen medicatie.Ben bang voor bijwerkingen
Ben wel bij een natuurarts geweest en slik nu een aantal supplementen.
Geen idee of reacties in het Nederlands geplaatst worden.
hoor graag van je!
groetjes Jeanne
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Hi Jeanne,
Dank voor je bericht, ontzettend balen dat jij ook FFA hebt. Ik gebruik ook geen medicijnen ivm bijwerkingen én de twijfel of het echt werkt. Ik lees van niemand dat het stopt. Mijn dermatoloog geeft ook aan dat hij niet weet of het werkt, en dat mensen bij wie het gestopt is, het kwam door medicijnen of gewoon uit zichzelf. Vaag allemaal. Ben met acupunctuur gestart en twijfel over een auto-immuundieet. Ben wel al veel haar kwijt, maar nog steeds niet direct zichtbaar. Aan de zijkanten 4 cm, en boven mijn voorhoofd voor de helft 3 cm en een deel niet waardoor mijn lok het nog verbergt.. En bij jou?
Als we niet in het Nederlands mogen plaatsen, gaan we wel weer over naar Engels.
Groetjes, Meike
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