Replies to This Discussion

Permalink Reply by Airam-FFA on May 15, 2017 at 4:28pm

Hi Leni,

I had several courses with an acupuncturist just after I was diagnosed with FFA - Nov 2016. I have stopped them at the moment due to cost.

I am going to focus on the AIP Diet and develop my willpower to see it through. I will keep you posted.

xOx

Permalink Reply by Leni on May 16, 2017 at 10:24pm

I just remembered another item I use daily and that is Nettle tea or Nettle Leaf tea. I get it on Amazon or Whole Foods. Helps with inflammation. There is no caffeine and you can drink it all day. AIP diet allows you to use honey, so I sweeten with a little raw honey. I definitely think it helps. I got some for my mom for her arthritis and she loved it.

Horsetail tea is also one to try, but it's more for hair growth.

Permalink Reply by Sad in chicago on May 10, 2017 at 7:39pm

I too have recently been diagnosed with pre diabetes and am trying to lose weight and eat properly (no sugar!).  I have to say though, my FFA has gotten worse and worse within the last year.  I am still managing it with now custom hairpieces, that all pretty much look alike, but wear one (less comfortable) for dress, one for daily at work, and another for exercise (really?  I don't really exercise anymore with this problem, the tape, etc. on the pieces come up from persperation, etc.) and a third for hanging around or walking outside on casual days.  This is a nightmare!  I almost wish I were totally bald, which would be easier.  I could shave my head, but I think it would be unattractive because my scalp is such a different color than my face.  Maybe it would tan too and then I might look ok, as I am still kind of pretty, especially now that I added eyebrows via tatoo.  But, alas, not pretty enough and too shocking.  And if the prediabetes is related, so what?  This hair loss is permenant, nothing I can do, and yes, I can try to not be diabetic in the future as health is so important.  My grandmother was diabetic and she didn't lose her hair!  So I guess I will try to be healthy and just shut up, but man, oh man, this is hard and certainly not anything I ever thought I would have to deal with.  We are all people who should be proud of ourselves for being able to move on everyday and deal with this.  It is the stupidest thing ever!

Permalink Reply by Airam-FFA on May 10, 2017 at 11:47pm

Hi Sad in Chicago

Big Hugs - I know what you mean but, you mustn't just shut up. We have an issue that is very real, and traumatic - and yes there is a very wide spectrum on the traumatic scale - nonetheless it is something that none of us thought we would have to deal with. I had never even known about FFA before last Nov (2016)- neither has anyone who I have shared my issues with.

This support group is a Lifeline. When I can't sleep or wake in the early hours - like now - it helps me to know there are others out there who know what I am going through.

Big hugs

xOx

Permalink Reply by Minter on May 11, 2017 at 9:03am

Sad in Chicago,  same from me, don't stop talking about this!  It is, as Airam said, a very real and traumatic thing that is happening to us and we are allowed to be angry about it.  Some days it is the last thing on my mind, other days it is all I can think about and I am so thankful for this group because I would truly be lost without you all!

Permalink Reply by DragonandFox on May 13, 2017 at 10:17am

yes, as "Sad in Chicago" and the others have said.  "this disease is stupid and traumatizing!"  I agree "Minter" we must keep talking about it and sharing everything we learn and experience.  When I speak about this disease I find myself referencing my FFA sisters (and a few brothers too) from this forum equally and sometimes more than my Doctor. I gave her the website so, perhaps she's a stalker here which would be FINE to me!  I would think she and Dr Cristiano might be interested in what we're talking about here since this is our place to vent and share immediate symptoms we're experiencing.

I agree "Ariam-FFA" this forum is a lifeline!!

Someone mentioned going bald but the issue is first off, many of us have a TON of hair other than the loss of the front (male pattern baldness, hair receded and mostly temple loss) but the other MAIN issue with Frontal FIBROSING Alopecia is the "FIBROSING" Part!  The "street" name for this form of alopecia is "SCARRING aolpecia!"  UGH!   I find if I don't apply the Clobetasol for a few days not only do I suffer excruciating painful scalp but I've seen the scarring start to take place! 

The other day my dog died and I sobbed for 2 days, the next day after he died, BOOM I had not only a broken blood vessel which I've had in the past on my temple (Dr says from using Clobetasol long term) but an OPEN sore!  The blood vessel burst open my skin. It went away in 4 days by applying Bacitracin (I found out when allergy testing to find out if I had allergies that I'm allergic to Neomycin AND to find out that my issue with my hairline was FFA.)

It feels as though it's always something with me since this diagnosis!!

Permalink Reply by sallylwess on May 13, 2017 at 10:10pm

I hear you!  I have so many gut issues.  I honestly believe they showed up about the same time as I started having problems with my scalp.  I talked to my GI doctor about it about a year ago and told her that since I had FFA/LPP that I thought it was related to my GI issues.  It took me two visits before she took me seriously enough to even look up FFA while I was in her office.  She kept saying, "I don't even know what that is.  I'm not a dermatologist."  Finally she looked it up.  To her credit, she then sent me to an immunologist, who then sent me to a rheumatologist.  No one had any answers.  At least now, they are aware of this stupid traumatizing disease.

I just had a colonoscopy this week.  They took more biopsies to see if I'm gluten intolerant.  Like you, I also had an ulcer in the past, but it is gone now.  I personally believe this is all connected to the gut in some way and it is also linked to the thyroid.  I am currently hyperthyroid after decades of being hypothyroid.  I have Hashimoto's.  I also am pre-diabetic.  I am allergic to steroids and gold and all forms of Clobetasol except the solution.  It is crazy.  

Permalink Reply by DragonandFox on May 14, 2017 at 8:31pm

Wow Sallywess,

what you're saying is SO familiar!  Not all the same issues. NO Thyroid issues though.  My cousin is gluten sensitive and has Hashimotos.  I'm pretty sure you can't determine GLuten "intolerance" from a biopsy (colonoscopy) but certainly they can tell if you have Celiac Disease which could indeed be your gut problems.  Celiac is pretty serious though Sallywess.  I mean, if you eat gluten with Celiac you could be causing some organ failure.  I know a few Celiac sufferers. One almost died after years of struggling with the disease and NONE of the Doctors knew what was going on UNTIL his regular (older) GP was out on vacation and he saw a young Doctor who was aware of some of these newer more controversial diseases.  That guy saved his life!  My motto is to really screen all my doctors now.  If they're closed minded or poo-poo me about ANYTHING, it's "C'ya!"  No time for arrogant jerks on my team!

In the Fall of 2013 I went to see my GP of years after not doing a yearly exam for over a year and told her I was suffering regular migraines and experiencing nausea every morning when I woke up. I told her I honestly thought it had something to do with getting old.  I have NO idea why I was so stupid, I had a lot on my plate (have had for too long now.)  Anyway, she told me to get off Gluten right away because she believed I was Gluten Intolerant. I was strict and, no lies, I woke up not nauseous after 4 days!!!  3 months later my migraines were gone!!!   I get them rarely now. Once in a blue moon for hormone reasons and I was getting them right before I had a Gall Bladder attack that landed me in the hospital, Oct 2016 where I had my Gall Bladder removed.  Never felt better after that!

Get off the GLuten.  It's not easy at first, but once you do it's easy!  You'll lose some weight at 1st too.  Also, DO NOT let people get you down when they make fun of you!  I got used to it and laugh with them about what a joke my diet is, like a SNL episode. That's me, No Gluten, semi Vegan, Hypoglycemic, Organic, etc.... whatever.

Permalink Reply by Beez on May 15, 2017 at 12:46am

Interesting and I suspect this is where we will find the answer. I too developed gluten sensitivity, some psoriasis and joint pains around the time my hair started falling out. I have always believed they are linked.

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