Replies to This Discussion

Permalink Reply by pauliegirl on August 3, 2017 at 12:13am

Hi Ellen, I am interested in your sunscreen and phenoxyethanol comments. Not sure if you saw my post of a couple weeks ago but I am really, really leaning toward an ingredient in chemical sunscreen as a large piece of the FFA puzzle. Interesting that you say you don't often use sunscreen. By chance, at least prior to diagnosis, did you regularly use any product on your face that could have had chemical sunscreen ingredients? (Moisturizer, anti-aging cream or lotion, foundation, powder,even?)
I need to read more on the phenoxyethanol. In my opinion at this point we must question everything.
My biggest thought is what out there became extremely prevalent in something people use, probably on our faces, starting in appx late 1980's/early 90's, as this disease was named in 94.
Tomorrow night I am meeting with an herbalist I met 3 weeks ago. She's all over this and since I stopped use of my daily face cream (that I used daily for well over 10 yrs!!) and am transitioning to all natural ingredients items on all of my skin, I am seeing some positive things...I am really excited. I need to write another post once I gather my info and experience.
Regarding your Vit D: doctor will only prescribe the 50,000 units of weekly Vit D when a patient has a level that's too low. Patients will usually take that for several months and then be re-checked, and likely then a maintenance dose going forward. There is such a thing as too much Vitamin D so patients should not be started on (or self-start on) higher temporary dosing. Please be sure to take a quality D3 with K2 once you're told to stop the prescribed one. Orthomolecular is a great one!
Take care,
Jamie

Permalink Reply by Ellen on August 3, 2017 at 6:19pm

I used Oil of Olay moisturizer most of my life (that had an SPF of 15), switching now and then to Clinique (no sunscreen, but Phenoxyethanol).

Phenoxyethanol has been called the latest "darling" in preservatives. I don't know how long it's been on the market tho.

I've read that it can effect an autoimmune mechanism, cause cancer, etc.

I, too, am changing everything, especially if I find Phenoxyethanol in it. Think of your skin as the largest organ you in your body. And we slather it with sun screen, moisturizers, creams and lotions, make-up, soaps, etc.

Ellen

Permalink Reply by illustr8r on August 3, 2017 at 2:27pm

Is it possible that any deficiency is a possible trigger?

My last flare was brought on by a B-12 deficiency and a crash in hormones.

I do have had a long standing Vitamin D deficiency (probably a decade- from undiagnosed CKD) so that fits the criteria.

I take 1000 mg of Vitamin D every other day. Prior to my last flare, I was taking 2,000 mg a day and my labs indicated it was way over the standard range.

I don't use a lot of sunscreen (the kind where you squeeze it out of the bottle before going the beach etc...) but all of my makeup, anti-aging face lotions have either SPF-15 or 20. I have used those for years. Lotta good it did me though- I still have pre-cancerous brown spots on my skin that need to be frozen from time time. I've switched my beauty products now to more healthful ones after reading everyone's posts here.

All the best to you. :)

Permalink Reply by Maz on August 4, 2017 at 1:33am

We may be onto something. I wouldn't be surprised if Sunscreens do initiate a lack of vitamin D and cause hair loss, presumably right at the hairline. However, you have to be susceptible to this effect because it is actually fairly rare. Although I have used sunscreens I have never applied it on my forehead because I've always had a fringe. I have developed FFA in my 60's, my daughter in her 30's and my mother in her 90's. Mum and I had decades of slow loss of body hair but it was fairly sudden for my daughter. She also needs to top up B12 from time to time. She has auto-immune issues and very high ANA's. She would not lack iron because she has haemochromatosis. If her iron builds up too much she has to give blood.

I haven't yet researched how the body utilises vitamin D. It may be that if your receptor (VDR) isn't quite right vitamin D may just build up in your blood and not be used properly. I'm just thinking aloud here (oops, I mean on the screen). I'll get to it when I can.

Permalink Reply by pauliegirl on August 4, 2017 at 7:23am

Maz, Fascinating! Thanks for your input. Can't wait to hear more when you're able to put more thought into it. Agreed completely that there has to be some sort of genetic predisposition. SO interesting the familial piece you all have. FYI my ANA is sky high. Question: though you haven't applied sunscreen to your forehead did you (and mom and daughter) ever apply for a prolonged period any face cream to the rest of your face that had chemicals that are (or could be) also in sunscreen? Do you know exactly when mom started showing FFA features brow and forehead hair loss)? Do you have a genetic research or medical background? It sounds like you do!:)
Thanks again~ Jamie

Permalink Reply by illustr8r on August 4, 2017 at 12:43pm

@Maz and @PaulieGirl

What were your ANA numbers? With my last flare I had a positive ANA for Scleroderma (Scler-70: 3.5).

I went to a rheumatologist and she did more tests and those came back negative. She was s bit baffled. I found an article that said FFA can trigger a positive ANA in elderly women. Well, I'm 52! That's not exactly elderly is it?

Stupid disease....!!!

Permalink Reply by Jess on August 5, 2017 at 6:51pm

I agree Maz. I just saw an article come out today that is stating that miRNAs may be involved in the pathology of FFA. The science is over my head, but miRNAs have something to do with gene expression. I suspect that there it is something from the environment (maybe sunscreen?) that is interacting with some genetic predisposition. I wish there was more funding for research so we could get to the bottom of this find a reliable treatment!

Permalink Reply by Ellen on August 5, 2017 at 10:39pm

I have switched my face foundation makeup in the last year, I had been wearing Clinique. I have to check next time I go to the mall if it had sunscreen or Phenoxyethanol.

Permalink Reply by Joy on August 25, 2017 at 2:31pm

Also if not sunscreen usage - mineral make up by chance - and even if you did not use mineral makeup there is an amazing amount of mica, titanium and zinc in the vast majority of makeups - the osteoporosis issue for some of us is interesting as well - most doctors prescribe D when that occurs but if we are not absorbing D we might develop osteoporosis because of that - I have gone off the osteoporosis meds as well but have done immense changes in water I bathe in, water I drink, toothpaste I use, and low sugar and high vegetable diet and adequate protein - my bone density had increased by 10% in my hi 2 years ago - do to go again in September so will see.  I was also low in iron.  Have been to the naturopath and was diagnosed as a fast oxidator - was not nursed as an infant - now I am suppose to cook most of my vegies add fat back into my diet and limit my fruit.  I use no sunblock, no day moisturizers, my LPP is barely there and pretty quiet most of the time - I have stopped using the mineral makeups but am still struggling with what to use as I too have not had enough time to research all the ingredients in them.  I think the VDR issue is interesting. What is ANA?

Permalink Reply by illustr8r on August 25, 2017 at 2:55pm

Joy- ANA is a lab test for AutoImmune diseases. It checks for Lupus, scleroderma, rheumatoid arthritis etc...gives you results if you have antibodies but it's not detailed enough for a specific diagnosis. So, off to the rheumatologist for more blood work.

I think my family dr was looking at Lupus as the reason for my hairloss so that's why she ordered the test.

Permalink Reply by Maz on August 6, 2017 at 10:57am

So many questions. OK - sunscreen. My mother is a redhead with very white skin. She always avoided the sun and covered up. I had zinc cream on my nose and cheeks when I went to the beach as a child but didn't use any product with sunscreen in it until I was 50, at which stage I started using various moisturisers, not on my forehead though. My daughter can't find a sunscreen that she doesn't react to, but she has tried many, plus moisturisers which are just as bad for her. I don't favour the sunscreen hypothesis but who knows!

I don't remember my mother ever having body hair (I used to hate touching her skin) but she had eyebrows until the age of 90. In the last couple of years her hair has become very patchy and she has that familiar white band from ear to ear. Old age would be blamed in her case but, even so, there are underlying processes going on. She has always had an amazing immune system. She coughed once when she was 40 and she was shocked. We all laughed at her. However, she has severe osteoporosis,

My body hair disappeared over about 20 years then my eyebrows within a couple of years. I started finding I couldn't get my hair to look right (because of FFA) about 4 years ago and it has progressed to behind my ears. So it became a problem in my mid-60s.

It's been more traumatic for my daughter who lost her eyebrows within a short time (almost overnight) in her mid-30s, then she noticed the hair loss (all three types of PL have been diagnosed). At around the same time she lost body hair. She also has lots of sensitivities to various chemicals, foods, etc. She has to be careful what she comes in contact with or suffer the consequences. Her ANA's are high. I don't remember anything about that except that it's usually in the thousands and the doctor keeps expecting her to develop one of several problems.

So, all that aside, the processes that are involved in hair loss may be very difficult to unravel. I think there would be interaction between genetic traits and environmental triggers. Just a brief look at the consequences of vitamin D receptor mutations (variations) is fairly mind blowing. I will study it on the internet (anyone can) but it's not going to be clear cut and I don't expect we will be able to change the course of our hair loss as a result of any inspiration.

I don't have a medical background. I have a BA degree and I majored in Human Bioscience. I just wanted to know how everything worked so I studied Geography (how the Earth works), Astronomy (the universe), Psychology (the brain) and Human Bioscience (the body). I did drop out of Philosophy - it was just too off with the fairies for me, though I found the calculus part of it quite interesting. Anyway, I found I was most interested in the interaction between genetics and the environment and would have been happy to work in researching such associations. However, I had my son 14 weeks prematurely and he developed a profound physical disability and medical issues. I have been caring for him ever since. I'm now going to the nursing home where my Mum is to feed her lunch and dinner every day. So, with the two of them, plus the normal household duties, etc, I just haven't got much spare time.

Darn, it's 1am, and I promise myself almost every day that I will get to bed by midnight.

Goodnight.

Permalink Reply by Joy on August 6, 2017 at 2:09pm

Have not posted in a quite awhile and found all of these replies to your post interesting.  I have had FFA and lichen planopilaris for the last 4 years although I think there were things going on long before that .  I had been treated for osteoporosis for at least seven years before that.  Initially mine started after some severe hits of stress in my life and all those wonderful shots that they like to give us at 65.  After that I had a huge hair shed lost behind left ear ( the side I had the shots on - two on the same day same arm) and a band around my head. I had been an x-ray tech and have several family members who have medical jobs so I to did lots of research on the internet as no one including my derm knew anything about it.  I opted not to do meds as I knew that to much medication was probably what had initiated it.  I took things like milk thistle and adrenaplex (to clean out your adrenals - this is the name of the one that I took but should be tons of others) I do take D and plant based calcium as I went off osteoporosis medication as well since no one knew what caused it. Lots of B vitamins for stress.  I substantially changed my diet for the osteoporosis to 80% plant based and 20% protein - no dairy - bottled water - filtered the chlorine out of my bath water - I was hard core!! I am posting as those of you who have history of osteoporosis you can change that by diet - after two years I actually increased my hip density by 12% - shocked even my doctor.  The odd thing for me is that even though I have done all these things the lichen continued just on the very front forehead hair line.  No hair loss since that initial shed but I was still frustrated.  Added pumpkin seed oil (heavy in zinc) and then went to the naturopath about 4 mos ago.  I actually went for a metals test since the regular doctors usually will not do them.  I also got a diet plan to go along with it.  Only slight mercury and aluminum - so longer wrap potatoes in aluminum foil or anything else and never have cooked with aluminum - they suggest only eating fish from the Atlantic so have followed that as well. I was low in iron, copper, selenium, manganese and chromium in order of most deficient to least - the ones that they look at for stress were still really high even after 4 years of B vitamins.  The most telling of it all though was the fact that they labeled me as a fast oxidator which means I basically do not absorb what I need from all those raw fruit kale smoothies and healthy salads I had eaten.  I know have to cook all my vegetables.  He has changed my supplements and I am just following what he has said.  He has added fats - cream, butter, eggs and red meat to my diet and then they give you a vitamin to alleviate any damage that they might due.  I am due for another bone scan in September and also my annual blood work which I am going to my regular doctor for since my insurance will pay for that.  My LDL's were 110 but HDL's 70 and triglycerides 38 (no I did not give up red wine and they attributed low triglycerides to that) so I am anxious to see what comes back on my blood report.  I to have hardly ever been sick in my entire life - I think I can only remember only having the flu really bad for a week where I had to be off work - I am now 69.  CARF which is an organization has some interesting research which you can all pull up.  They have advised those of us with this to not use anything with zinc or titanium in it - most of the mineral makeups and lots of other makeups contain those ingredients.  I used mineral makeup and sunblock for decades.  I no longer use them - am conflicted about the sunblock - there are several makeup lines that you can find that do not contain those ingredients.  My lichen is 99% gone since stopping using them.  Think about all the places we have either had makeup or sunblock and now have no hair there.  The mineral issue is because they are grinding the particles so small that they penetrate deeper into your skin the longer you are in the sun.  Will report in at the end of September as to what shows up in my blood work.  I have passed this info about the naturopath along as it is expensive and I know that not everyone can afford to go there.

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