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Comment by sadandunsure on August 15, 2015 at 7:19pm

No offense, but every time something else new is mentioned, people rationalize themselves into that being the explanation. Everything should be taken into consideration, but I'm not a fan of drumming up unproven theories. First it was a ppar-y thing, menopause (altho an 7-10 of us are in a thread where none of us are or were near menopause when this started), then medication induced, and so on and so on. All of this is just research and theories and until mass studies are completed none of it can proven, just be careful about jumping the gun and asking for all these meds

Comment by MJ on August 15, 2015 at 5:57pm

I had been using retin a on my face, had low ferritin, and was raging into menopause due to tamoxifen. My doctor is Wilma Bergfeld and I can't wait to ask her about this at my next appointment!
MJ

Comment by Maddy, California, U.S. on August 15, 2015 at 4:42pm

Wow. This is really a fascinating thought about Vitamin A. Just wanted to chime in about a couple of possible connections that I have thought about since this discussion started. First, I used to take a multivitamin everyday that had a lot of vitamin A in it (along with a lot of other vitamins, of course), but I stopped taking it about a year ago because I noticed that whenever I took it regularly, I noticed more hair thinning around my front hairline. Also, when all of my FFA started, I was using Retin A on my face regularly. During peri-menopause, I started getting cystic acne on my face (never had acne before this) and my doctor prescribed Retin A. That is when my hair started falling out on my temples really bad. Of course, I was in peri-menopause (my hormones were fluctuating like crazy!) and had VERY low ferritin levels as well. I also had my first flu vaccine, after contracting a horrible flu the year before, which I also feel added to the hair loss/developing this condition, because a bunch of hair fell out a couple of weeks after I had it. My immunologist and endocrinologist all say this revving up the immune system could exacerbate the situation.  Anyway, just wanted to share my experiences with all of this. Now I have to go look up those foods high in vitamin A...

Comment by Lo on August 15, 2015 at 2:17pm

Lacazette, I forwarded your research links to my derm here in Pennsylvania. He is on CARF's preferred list of doctors. That is the best I think we can do... Is pray that one of these doctors pushed the issue. I did read up on foods high in vitamin A... So would it be a good starting point to just avoid or minimize too high amounts of vitamin A in our diets? Of the top 10 foods high in vitamin A, I eat 9 of them on a very regular basis. So I have to wonder if that had an impact?? Plus my multi vitamin has vitamin A in it. Just a thought?

Comment by lacazette on August 15, 2015 at 2:10pm

No one is interested to find ways to have access by hospitals/professors,etc, to an ALDH1A1 inhibitor? It could be the answer, save our hair and solve the LPP problem!

Would mean no more medications that just try to stabilize the disease. Here we would fight directly at the root of the problem!

Dr Wilma bergfeld, and Dr Olsen are two of the researchers that linked altered vitaminA metabolism  in CCCA patients.

CCCA and FFA is the same disease with same causes and consequences but with a different pattern hairloss

 Aldh1A1 inhibitor could save our resting hair girls!  it would be worth a try

Comment by Lo on August 15, 2015 at 1:25pm

Marian... I hear your frustration. How long have you been dealing with the loss? And are you taking plaquenil as your treatment?

Comment by Marian on August 15, 2015 at 1:18pm

I am lucky that all my appointments are covered by our national healthcare but am still a little shell shocked by prices of what will be my future hair solutions. I have lost a lot from around my ears, temple and front and basically if I pull my hair back I look bald. I can still get away with my natural hair as long as it is not windy but I think my days are numbered and to be honest I am tired of constantly checking my hair. I am still doing meds and rogain for the time being and I do believe I have bought time with them.

Comment by Lo on August 15, 2015 at 1:04pm

My insurance will not cover any of the hair pieces. I've spent thousands. They cover (at a certain percentage) my doc visits and shots:prescriptions, by that is all. It is such a bummer because it is very expensive. Marian... Are you on treatment, and about how much have you lost? Is it at temples or above ears (in addition to the front recession)? Thanks.

Comment by Marian on August 15, 2015 at 12:59pm

Thanks for the responses about your hair pieces. I am going compassionate beauty which deals with medical wigs and services for a variety of illnesses. The piece I am looking at would (at least what I understand) cover the missing hair at the sides as well as the receded hairline at the front. It would be glued and or taped on to my skin. As I said my real decision is when to jump into this solution as sadly I don't think it is stopping and i don't want to have to replace it too quickly at that price. Has anyone been able to recoup money through their insurance plans? Mine says it will cover a medical wig for chemo only.....Grrr frustrating.

Comment by sallylwess on August 15, 2015 at 12:17pm

Marion, the piece is not going to be human hair.  I was conflicted about making this choice, but in the end, went with the professional's advice.  She will style it to look like my hair.  It cost me $1150.  Unfortunately, I think I have already spent that much on hair pieces and wigs that were really not right for me and did not work.  I would have save myself a lot of money and grief if I had gone to a professional who works with medical wigs instead of going to wig shops.  I wasted my money in wig shops and never got anything that really worked even though one topper that is labeled as human hair appears not to be.  The professional at the medical wig shop tested it and said it is probably human hair mixed with synthetic.  It cost $500.  It is the wrong color for me and really can't be styled or dyed to work.  Buyer beware.  Work with medical wig people.  I will never go to a wig shop again.  

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