Replies to This Discussion

Permalink Reply by Lo on April 3, 2017 at 7:47pm

Seems you caught it early which could be a great thing. I lost my eyebrows first then the hairline started to go. I am on plaquenil with no ill side effects thus far. Hair loss continues but it is pretty slow. So not sure if that's due to medicine or just the nature of the disease. Always hard to gauge that. Wishing you well and welcome.

Permalink Reply by Beez on May 10, 2017 at 12:17pm

Same for me, eyebrows first. That's what originally sent me to the dermatologist--

Permalink Reply by CarolJ on April 3, 2017 at 9:19pm

Hi Temmelou, I have been treating this crazy disease from a general autoimmune disease approach. Autoimmune disease is an increase in systemic inflammation so I have completely changed my diet i.e. close to no sugar, dairy or grains (especially gluten containing ones) and I take a few supplements like vit D, curcumin, milk thistle, probiotics and others. I have also changed a few things in my life to decrease stress. I had the LPP part of this disease around my lips and rosecea and those things have completely gone away. I also feel my hair loss has (possibly) stopped. I say possibly cuz it was very slowly falling out to begin with plus I don't want to jinx anything! :) I also use an essential oil mix on my hair. I can relate to you because I do not like to take meds either and was looking for alternative treatments too. I have to say I did notice some improvements within a couple months of changing my diet plus the other things but in reality I think it was about 8 months into all the changes before I could honestly say it was all "working". I would encourage anyone to try this approach, I really think it works but its something you have to stick with! It's a life style change for the most part.
Hope my "story" has helped! Good luck to you!

Oh I forgot...I do use a topical antiinflammatory solution called Clobetisol on my hairline. But only use it at most once a week. Don't really know if I still need it but it gives me a little extra assurance the inflammation is staying away. This was actually the only med my derm ever prescribed due to everything else having such bad side effects.

Permalink Reply by Temmelou on April 25, 2017 at 8:20am

Hi Carol J, sorry it has taken me so long to respond, no excuses, just life.  Anyway I am very interested in your diet, if you could provide more details or a website, I would really appreciate it.  I have researched anti-inflammatory diets and am finding conflicting info, so was wondering what is working for you.  Additionally, my daughter just turned me on to essential oils, so also interested in your recipe.  I really appreciate your post as most people are more on a drug regimen.  Thanks again for all your support.  Hope your status is still on the positive side.  

Permalink Reply by Airam-FFA on April 25, 2017 at 1:03pm

Hi Carol J and Temmelou

I would also be interested in hearing more about the diet and essential oils.

Like you I am just using Clobetisol on my hairline when it itches. I have a prescription for Hydrocloroquine but am reluctant to use it due to possible issues with loss of eye sight. I did have several sessions with Chinese medicine and acupuncture when I was first diagnosed last Nov (2016) but this is too expensive for me at the moment.

I take turmeric in the form of Golden Paste as it helps with inflammation.

xOx

Permalink Reply by DW on April 25, 2017 at 10:19am

Hi CarolJ
I also take no medication other than the clobetasol periodically on my hairline when it gets itchy or sore.
Would be very interested to hear about your essential oil treatment and also diet as well. Nice to hear some positive information for a change :)

Permalink Reply by Temmelou on April 25, 2017 at 1:17pm

Absolutely, will share as soon as I get the info!

Permalink Reply by illustr8r on April 25, 2017 at 12:47pm

Hi Temmelou,

I was diagnosed last week with Lichen Pillarpilaris indicating to FFA because I lost my eyebrows 2 years ago and the pattern of hairless is beside my ears and my temples. 

I made the decision to not take Plaquenil as I have stage 3 chronic kidney disease and having renal problems increases the chances of experiencing the severe side effects of the drug-while unable to take the full dosage. All the risk of eye problems without the benefits.

I started taking 500mg of Turmeric daily after researching that it is an anti inflammatory and WebMd states that it is helpful with Lichen Plano.

I would be interested in CarolJ's diet too. As it is I've restricted my diet a lot to ease stress on my kidneys-I could take it a step further for my hair too.

All the best to you. :)

Permalink Reply by Temmelou on April 25, 2017 at 1:14pm

Hi illustr8r!  That is so interesting, because I bought tumeric lately but have not started taking it yet. I  will definitely start it today.  I will forward to you what I hear from Carol.  We are all in this together and I think its great we can share ideas and research to help each other.  Hang in there, we will   control this illness and not let it control us.          All the best to you too!                                                                                         

Permalink Reply by illustr8r on April 25, 2017 at 2:39pm

It's amazing how much researching I have done after getting diagnosed with this condition. Rollercoaster of emotions and keyboard time...

I wanted to let you know that I am using Clobetasol to help with the itching. I didn't have itching when my eyebrows disappeared or the early retreating hairline-but I am now. My Derm says I am having a "flare." 

I asked her about using Protopic/Tacrolimus. It's a topical autoimmune suppressant. I'd be inclined to try that because it's targeted for the problem area, not my whole body.

Thing is...more reading seems to show this mess eventually "burns out" and I just don't know if anything can really help. I have already bought some cute beanies and hats and bookmarked buzzcut hairdos. I'll put my best face forward the best I can. :)

Permalink Reply by AnnieMay on April 25, 2017 at 2:25pm

I am also interesting in learning more about diet. The only thing my dr prescribed was a topical anti inflammatory, Betamethasone Dipropionate lotion once a day, but I seem to be sensitive to all medications and even that is causing me side effects so I think I will cut back to a couple times a week. It's all so confusing because it seems that so many drs approach treatment in different ways.  I'm definitely going to look into Tumeric. 

Permalink Reply by CarolJ on April 26, 2017 at 12:06am

Hi All,

I had to go back and look through all the notes I took when I was first diagnosed. I went a little crazy googling every question that ever popped in my head at that time. Seeing pictures of women with half bald heads kind of makes you freak out a little! There were a lot of websites that I think were helpful with the diet. After all the research, I decided to go with the AIP diet. Stands for Auto Immune Protocol. The best websites I found are as follows:

www.paleomom.com

www.saragottfriedmd.com

wellnessmama.com

ultimatepaleoguide.com

aiplifestyle.com

A lot of these sites say the same things but maybe in different ways. The paleomom site is great, besides telling you all about the diet, she has books on this and cookbooks too. I never bought any of them. I felt pretty confident going into this diet with everything I read and there are lots of recipes for free on line and on pinterest! The diet is hard. I was hungry a lot at first and didn't feel the greatest because of a thing called the herxheimer effect (that only lasted of couple days) but I was determined to "fix" myself so it really wasn't that hard to stick to, I just knew I had to do it. 

Also I've found chriskresser.com (he's a functional medicine dr.) to be very helpful and full of all kinds of information. He has articles and podcasts etc.

draxe.com is okay too, although he's got lots of stuff for sale, I just look past all that.

functionalmedicine.org is a website to find a functional medicine doctor near you if you're interested in that

Another thing I found on Youtube was a video series called the Betrayal Series by Dr. Tom O'Bryan  That had all kinds of really good info on autoimmune disease in general. On a side note... In all my research I've never come across any mention of FFA when anyone talks about autoimmune diseases but I think because it's relatively unknown to anyone who doesn't have it. But I figure it to be associated with any of the skin diseases. And if something will help the skin it will probably help the scalp since that pretty much is skin.

Also since I've done so much research I looked into all kinds of possible reasons for this for me. Some things were that I was on birth control pills for 15 years. I also believe candida infection (intestinal) was a problem for me. And stress, for me just a general low chronic stress not any one big event. Everyone is different so you need to kind of look into everything! When I was googling stuff I clicked on everything that popped up and every link just to see what it said. Sometimes it was helpful and sometimes it was nothing but I was a bit obsessed in the beginning. They say knowledge is power!

I read about essential oils on this site so that's how I got turned onto that. I found a blend at a local health store in my town and now I order it online. It's a blend of Cedarwood, Juniper Berry, Rosemary and Argan Oil. It's made by GoDesana, it's called Hair and Scalp Serum Age Delay Blend.  I use one drop and rub it on the tips of my fingers and rub it into my hairline first and then the excess all over my head. At first I didn't think one drop was enough but actually a little goes a long way and that way your hair isn't too greasy.

I also highly recommend some form of turmeric/curcumin. I take  Curamed 375mg twice a day. It is known to have great anti inflammatory effects. Also Vitamin D and I have found for me (everyone is different), that a little more vit A is better. I take a multi vit to get about 10,000mg per day. I was taking about 25,000mg per day and that was too much as I noticed more hair shedding. But the 10,000mg seems to be just right. The multi vit also has a good amount of vit b in it. All the B's and they are the methylated form. Omega 3's, a probiotic, magnesium, grapeseed extract (pill form, not liquid) and milk thistle for liver detox.

Whew! I know that was A LOT!! Sorry....Just hope to help! Like I've said, this is my story, everyone is different!! Hopefully this will just give inspiration to do some research and figure out what will help you!!!

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