Replies to This Discussion

Permalink Reply by Debs on August 30, 2013 at 2:10am

Hello Sam, welcome to our group. Celia started this group up just a year ago and our numbers have now swelled to 91 ladies. This FFA is not a rare type of alopecia, more and more ladies are being diagnosed unfortunately. Like you I am someone that does not usually take medication and try to use diet and exercise to keep well... I have however been taking plaquenil for almost 6 months. It is a drug that has been used for many years in the treatment of autoimuune conditions and the macular degeneration that can effect eyesight is extremely rare and if it does happen it occurs slowly so you can stop taking the drug to prevent further damage to sight. It has been shown to help approx 50% of women with FFA.

Turmeric is proven to stop inflammation in autoimmune conditions.. I take that as a supplement and also ginger - another proven anti-inflammatory.

Please check out the Joe Cross re-boot juicing website. He is an australian guy that had a very painful autoimmune skin condition. He was actually using many of the drugs we are being given for our FFA. He has a one hour documentary called 'Fat Forty and Nearly Dead'. He was at his wits end and used a juicing diet, supervised by a doctor to re-boot his body. Dr Joel Furhlman in the USA was his doctor. I did a 5 day juice fast in July this year. Since then I am doing the anti-inflammatory diet that the american doctor Dr Weil recommends and i also include at least one fresh vegetable juice a day and I have lost weight (an unexpected side effect) and I feel my skin looks fresher, younger and my front hairline is calmer. Of course the plaquenil may be working too but I feel I am doing everything in my power to help my body heal itself. I go back to my derm in Novmber, like many of the ladies in the UK I go to Dr Harries. I may take antibiiotics if he recommends them but I will not do anything more extreme with my medications as like yourself I don't want to make myself ill with drug side effects.

I therefore suggest the anti-inflammatory diet approach of Dr Weil, turmeric and ginger supplements and of course exercise. Oh and I also have made my own concoction for my scalp. Essential oils: 4 drops turmeric, 2 drops lavender in 10ml of marual oil (I use marula oil as my carrier oil because it has fantastic healing properties and is used in east Africa to heal wounds and burns) I apply this essential oil blend once or twice a day with a cotton bud. It sinks in so does not leave a oily residue. I prefer this to a steriod lotion.

I think many of use really would like to have more natural options to fight FFA with.

Good luck with your treatments.

Permalink Reply by Michjo57 on September 2, 2013 at 10:31am

I also use essential oils. Are they working for you? Have you noticed any regrowth?

Permalink Reply by Mary on September 12, 2013 at 5:39pm

How much turmeric should one take? I am just feeling horrible about this diagnosis. Some people's posts seem so calm and rational but I am not there yet...I am panicky and miserable and cry a lot. Thanks.

Permalink Reply by Sam on August 30, 2013 at 7:29am

Hi Debs! Thanks so much for the great information! I will definitely check out/try your recommendations. I think I will also start juicing. At this point the diet change is all new so it's hard to figure out what all I can eat and I'm all for a weight loss bonus :). It's great to be a part of the group and by no means does my own paranoia on medicines mean I think anything of someone else taking them. I certainly know, never say never, and maybe I will end up trying something more aggressive once I have all the information.

I do wonder how common this is as now that I am on hairline alert, I do notice many women with receding hairlines, even friends of my own. Maybe it is more common and just not diagnosed but perhaps stops more often naturally? Who knows. Well cheers to you, have a great rest of your day and thanks for taking the time to respond. Sam

Permalink Reply by Sam on August 30, 2013 at 6:03pm

Hi Carol, Thanks so much for your reply. I actually went back to Dr. Shapiro in NY today and ended up doing 30 shots in my scalp...so much for completely natural but he seemed to think that maybe with the shots and cream maybe I would need meds. Interesting he recommends doxicylomine while the other doc I am seeing thinks ceptcell is better for me (and spoke of paquenil). They also differed in what lotions, Dr. Pappert said clobetasol but Dr. Shapiro thought that is too strong, makes skin too thin and veins stick out. he recommended another but I forgot the name. I am getting both and will research.

I like them both doctors though, so I will continue with both. I will have to look into the injections more now, I was concerned that they can cause hair loss as I thought that happened with my brows but I just did it once and stopped so maybe that is not enough. He did say that shots could cause regrowth in eyebrows but not in hair but could hopefully stabilize.

He said he uses a low dose and did 30 shots from behind my ears arching around my head. He said it could make the dent but it was a cm back behind my hairline so it wouldn't be seen and would go away after. Does that sound right to anyone that tried the shots?

My plan is to do next 2 rounds of shots w the other doctor then go back to him in 3 months. What I really like about him is he brings up an image of my scalp on a computer screen that is crazy magnified and counts how many hairs I have in an area and the thickness of my hair shaft. So at least we will be able to track it.

So fingers crossed the topical and shots (if I continue) work and I'll keep up with the Latisse and the natural route too.

The dealing actually feels easier already. I am going to try my best to live life and not focus on it until I really have to. It's great to see there are a lot of head/hair options and luckily I already like hats and headbands :)


Any thoughts/recommendations always welcome and I'll be happy to share if I have anything good.

Permalink Reply by PamW San Diego, CA, USA on August 30, 2013 at 11:22pm

Hi, Sam. You are lucky to be able to see Dr. Shapiro, he is very well known. One thing I tell everyone to do is to get onto the CARF website. This is an organization that has a lot of information about doctors, treatment and research about FFA.

I am unlike the others in this group and willing to try any pill that I could swallow or use any cream that I can apply. I have been on plaquenil for a year and use clobetasol 3x a week, and also take the supplements of revesterol and turmeric. When I was first diagnosed, I was given the antibiotic doxycycline. This antibiotic has anti-inflammatory properties and is prescribed for other skin conditions such as acne. My understanding is that cellcept is given if plaquenil does not work and is a pretty powerful drug because it suppresses the immune system which can cause other disease. I have also gone gluten free, and avoid whenever possible, sugar and dairy.

I know losing your eyebrows can be stressful but most of us have gotten permanent make-up tattoos and are very happy with them. Good luck to you.

Permalink Reply by Debs on August 31, 2013 at 3:32am

Hi Sam, the treatment you are having is the same drug protocol that the rest of us are using in the USA and in the UK. Please be reasuured you are being treated with the most up to date info the doctirs have on FFA. I have my eyebriws tattoed. A few months ago i also had my eyelashes enhanced. I still have eyelashes but less than in the past. Eyelash enhancement is a very fine kine of tattoo round your eye, really subtle not like you get with an eyeliner pencil, it gives definition to your eyes so if yiu do lose more eyelashes you have this in place. I feel greatly relieved to have this work done. It doesnt hurt and it normalises our faces.

I was diagnosed in Dec 2011. I am now pretty much back to normal psychologically. Taking control by getting my tattoos done and finding practical solutions of scraves, buffs, bandanas and wigs plus having treatment with dr harries and doing my juicing and anti inflammatiry diet has pulledcmy confidence back up and i do feal like my old self. It dies take time to adjust to rhis condition but you will get there.

Enjoy your weejend. Xx

Permalink Reply by PamW San Diego, CA, USA on August 31, 2013 at 9:27am

Deb, I am thinking about lash enhancement. I know you said it was painless, but does it have to be touched up yearly like our brows?

Permalink Reply by Debs on August 31, 2013 at 2:15pm

Hi Pam, the lash enhancement needs to be touched up approx every 2 years. I had 2 treatments to begin with and then i get them touched up in 2 years. The procedure was very easy although the thought of someone coming close to your eyes and tattooing sounds horrific... You are laying on your back and you look up and into the cirner so you dont see the technicians hand or the needle. You just keep looking into the corner of the room ( rhe cirner of te ceiling) and there is not really any sensation. You have an anaesethic gel applied first. The effect really subtle and it does not look like i am wearing eyeliner... The line is so thin and in the lashline. I had black because that is my eyelash colour. I can thiroughly recommend this for FFA.

Permalink Reply by PamW San Diego, CA, USA on September 1, 2013 at 5:30pm

Thanks Deb. I will discuss this with my technician when I go back in for my eyebrow touch up.

Permalink Reply by Michjo57 on September 1, 2013 at 12:58pm

Is the Plaquenil working for you? does it prevent progression and regrow the hair. I'm afraid mine is too far gone now that nothing but the Grace of God could fix this.

Permalink Reply by Michjo57 on September 1, 2013 at 1:13pm

Sam, I was recommended to take Plaquenil, Methotrexate, and Griseofulvin by different MD's. I decided that at my age that I did not want to take any drugs with the side effects. Methotrexate is used to treat cancer, Plaquenil originally for malaria. I am in the medical field and I have seen bad things by using drugs "off label" which means using them for things other than what they were made for. In fact, I feel my autoimmune disorder started from a dermatologist prescribing a cream for precancerous spots on my back. The cream activates your immune system to fight the precancer lesions. Terrible stuff. My alopecia started about a month using that stuff. Maybe a coincidence. I went to a new dermatologist and she said I should have never used that on my back. It is made for the head and face only and to be used in bald areas. I decided to forego the meds and use essential oils only.

This weekend is the first year anniversary of wearing hair. I spent six months in hiding, having a huge pity party, felt the joy in my life was gone. This weekend, I went to a wedding and reception and had a great time. I live my life with wearing hair, as it was my own now. I decided that am not going to let alopecia ruin my life or run my life. It is hard to get through. I used essential oils for emotional healing, which is huge. I've always had a strong faith in God, and my spirituality is even stronger now. It was a definite wake up call.

I think of that Kelly Clarkson song, What doesn't kill you makes you stronger. Alopecia definitely does that. I wish you Peace and God's blessings! Watch the you tube video from NAAF keynote speaker Ali Lambert I think is her name. (NAAF National alopecia foundation)

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