Comment

Comment by Judy on January 23, 2013 at 10:58pm

Hi, I agree about antibiotics destroying your bacterial balance. I always take the probiotics if I MUST take an antibiotic. Recently I asked my doctor what I could do to improve setting off this aauto-immune disorder. She recommended probiotics and stree reduction. I had not considered taking probiotics all the time. Thanks for the reminder.

Comment by ElleMN, USA on January 23, 2013 at 10:39pm

Hi Lace! I'll let my dr know about you; you'll debunk her theory. Another thing she told me was that this was first diagnosed in 1994 but that in the last few years there has been a huge upswing in cases. Why now?

Comment by ElleMN, USA on January 23, 2013 at 10:18pm

Dr H also has me switching between the DHS and H & S classic clean, and shampooing every day (normally I would shampoo every 2 or 3 days--these Minnesota winters are pretty dry).

PJ-- interesting take on antibiotics; I have the opposite hypothesis. I was taking antibiotics a lot and I think I messed up my body's bacterial balance. I've been taking kefir to try to boost my good bacteria. Have you heard of the Human Microbiome Project? Just another thought to try probiotics.

Comment by Lace on January 23, 2013 at 10:13pm

To Minnesota Mom:

I'm Black, and i have it; it could be more prevalent with people of European descent, but it's not exclusive to them.

Comment by PJ - MN, USA on January 23, 2013 at 9:00pm

PamW - it is the Classic Clean 1% zinc for the Head & Shoulders. The DHS shampoo has 2% zinc in it.

Ellen and I see the same Dr. Which is very interesting hearing our different treatments, but yet some of our early symptoms and such are very similar. Good to hear you have had the dents dissapear that soon. I've had mine 1 1/2 months now and no signs of dissapearing. I use the generic Retin-A on my face for my rosacia and the bumps that go with it. So far I don't see a change. Still have bumps and a red face. I've been teased since I was young about my red face and how easily I get "embarassed". My rosacia has bothered me more over the years than the hairloss. I really feel that FFA is caused by something in our environment or a chemical in a product that we have used or ingested. I have been on antibiotics alot over the years. I wonder if that has helped in keeping my FFA from being as advanced as others that have had it as long as me.

Comment by PamW San Diego, CA, USA on January 23, 2013 at 8:24pm

PJ, if you get a moment could you look at your H and S shampoo and tell me what percent zinc is in it? Is it 1%? Thanks. There are so many formulations of Head and Shoulders, I want to make sure I have the right one.

Comment by PamW San Diego, CA, USA on January 23, 2013 at 8:21pm

Welcome, Ellen. I also read that it affects people in upper income brackets so maybe it is a lifestyle or diet issue, too. I also read that people with one autoimmune disease are prone to other auto immune diseases. I always had stiffness in my joints and red cheeks. Now I know that these are all signs of inflammation in our bodies. I like when we share what our doctors are actually saying and doing for us. The only common thread I have picked up so far is that everyone is different and there is no telling how bad we will get or if we will improve like PJ. Good luck to you and keep sharing!

Comment by ElleMN, USA on January 23, 2013 at 6:58pm

Hello ladies! I joined this group in Nov but haven't contributed to the conversation yet. I was overwhelmed as I read through the threads about how similar my story was to so many. I'm 45 and was diagnosed Feb 2012 when I started working with Dr. Hordinsky at the U of M. It was my eyebrows disappearing that got my attention, and then the hairline slowly followed; all of this really starting 4 or 5 years ago. I have an 8 and 5-year old so I've been pretty tired and sleep deprived for most of this time so who knows when it really started. In 2009 I had been suffering from lots of eczema and psoriasis, and multiple illnesses in 2010--everything my kids brought home--and some joint stiffness so I was tested for lyme, lupus, celiac, allergies, thyroid, everything with the only abnormality showing up being low ferritin. I was relieved to not have something life threatening. I worked with one dermatologist who biopsied my scalp and diagnosed LLP. I then found Dr Hordinsky through CARF and she diagnosed me with FFA. The unknown aspect of FFA is what is scary to me, just not knowing how bad it will get. I once said outloud,"I wish my eyebrows would come back so I wouldn't look so weird" to which my daughter said "mommy you just look like you." :)

My current treatment involves steroid injections every 5-6 weeks, 5% rogaine foam at night, desonide on the eyebrows during the day. I also just started using the generic Retin-A on my forehead to build up the collagen to mask some of the blue veins showing through my skin (extra bonus using it on other parts of my face! bye bye wrinkles!) I also get indentations almost every spot I get injections but they bounce back after a month or two.

My hairline still keeps moving back, but I do see some hairs poking through. One thing my doctor mentioned is that this is a disease of caucasian women, which I find interesting. I wonder about an environmental trigger (watch the movie Plastic Planet if you get a chance). There is no alopecia in my family. I eat organic food most of the time. And I now eat gluten-free, soy-free, dairy-free when I can (this is new since the FFA.

Thanks for starting this group, and thanks for sharing all of your stories. It has helped me a ton.

Comment by PJ - MN, USA on January 23, 2013 at 9:11am

PamW - I forgot to mention on my shampoo, I leave it on my hair for 3-5 min then rinse it off.
Rebecca - I was told the dents go away or they smooth out. The timeframe varies person to person, but usually takes months to a year. I'm going to ask my Dr again about that.

Comment by PJ - MN, USA on January 22, 2013 at 11:51pm

I was diagnosed with FFA with a scalp biopsy. The redness on my scalp varies, not sure why. My hair products: Shampoo - rotate every other day between Head & Shoulders (zinc) and DHS Zinc Shampoo; Conditioner - Free and Clear brand; Hairspray - Free and Clear brand. This regiment was prescribed by the Dermatologist I see at my first appointment. I was told previously there was no regrowth too. I didn't think to ask her about it, I was too excited to hear things were better I guess. I'll make a note to ask that at my next appointment in a few weeks. I wonder if the histamines/allergens has anything to do with things. I do have alot of allergies. Something to keep in mind when I take allergy meds or get my allergy shots. I'll have to see if I notice a difference.

Congrats Robyn! Enjoy being a grandmother.

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