Replies to This Discussion

Permalink Reply by Minter on December 29, 2017 at 5:48pm

I bet I'm not the only one that just checked to see if I am a 4 or 5 head, as I'm definitely not a 3 head! I'm a 4-ish by the way ;-D

Permalink Reply by Jeanne on October 25, 2017 at 7:07am

I have been diagnosed with FFs , I think I must have it a few years as every time I’ve got my hair coloured I noticed my hairline had receded, I thought it was the colour so I stopped . I’m seeing a dermatologist in November , as totally stressed about this , which doesn’t help I’m sure , has anyone on here had any positivity from treatments ?

Permalink Reply by BBQueen on November 6, 2017 at 9:35pm

Hi All- I've had this for about 5 years. Last year I took Cellcept and I believe it has stopped it. I've been off it for 6 months. If it didn't burn it out it has slowed it to the point I don't notice any more loss (I think). I wouldn't waste time with Finasteride or plaquill (I did for a year). I wear a bonded hair piece that works well. Ive lost 1.5 inches from ear to ear. God this is so f'ed up! But I'm dealing with it. I hope.....

Permalink Reply by Lynda on January 3, 2018 at 11:09am

I was just diagnosed last fall, but have been experiencing hair loss for several years. Because I am fair-skinned and live in Arizona I am still using sun screens, but also wearing long sleeves, hats, etc. My preliminary treatment was a round of steroids and antimalarial meds, but I discontinued them because of fears about the side-effects. I am experiencing significant itching all over my body recently, but don't want to go back on steroids. Has anybody experienced this? I am taking an antihistimine at bedtime just so I can get some relief, but I'm hoping this is just part of a cycle that will calm down again. My full diagnosis is Graham Little Piccardi Lasseur Syndrome with frontal fibrosing alopecia, so I wonder if any of you have any experience with that. Any information would be greatly appreciated.

Permalink Reply by Airam-FFA on January 8, 2018 at 8:57pm

Hi Lynda

I hadn’t heard about Graham Little Piccardi Lasseur Syndrome with FFA - so I looked it up.

https://www.dermnetnz.org › topics › graham-little-syndrome

Interesting that they are prescribing Thalidomide for it (New Zealand Website)- I thought that that drug had been abandoned following the Law Cases in the ?1960s when expectant mothers were given the drug for morning sickness and many babies were born with partially formed limbs.

I have had the itchy skin all over my body, but fingers crossed that has now ceased. Now I just want the itchy scalp to also cease and for the FFA to stop - and even better for the dead hair follicles to come back to life :(

xOx

Permalink Reply by illustr8r on January 8, 2018 at 10:32pm

I haven’t heard of Graham Little Piccardi Lasseur Syndrome either but I went to the link on the NZDerm site and that lady’s skin looks like mine (pale at the hairline and blotchy everywhere else). Plus, I hate to admit it but I’ve lost a lot of hair *blush* “down there” but I haven’t noticed much loss from my underarms or legs. 

Yet... :(

Permalink Reply by Glenda Australia on January 10, 2018 at 1:15am

Hi Glenda from Australia. When I first noticed eyebrow and frontal hair loss some 8 years ago I started on the dermatology path. Wasted a year with the initial one but then referred to another who asked. Do you wish to handle aggressively or passive. I took the former yes had monthly injections with some medications and creams. Last July I had my 12 month checkup - appear to have reached BURNOUT. I have lost approx an 1inch from forehead and 1 1/2 from each side. Dont know if helped but I ceased from using colour kept my hair short and often swapped my fringe side to air infection. This was my call not from dermo.  This is one happy lady. 

Permalink Reply by Minter on January 10, 2018 at 8:19am

Glenda Australia, that is great news! 7 months on from your last check up and no change, I agree that would be a final burnout of this stupid disease- very happy for you!! :-) 

Permalink Reply by Joy on January 12, 2018 at 5:40pm

I think a better way to describe what happens is inactivity - no one medical or otherwise knows what causes this - why it occurs some with spotty patches other of us with the bank around our face and usually behind one ear - some like myself have lost almost all body hair with only about a 1/3 of my brows left - and why it goes to inactive.  Please if you are not on the facebook sight Let's put out the fire - I would suggest to join that sight - there are 800 - all ages, male and female, young and old, one as young as 3.  There are reports regarding SPF - I do not use it anymore - if I am on vacation by a pool I will use a physical product and I might put it lightly on my face - but the rest of time "No" - I have stopped using all mineral makeup - I have chosen to not do meds as immunizations at 65 is what put me over the edge.  Looking back on it I think I had slight scalp issues long before my diagnosis 4 years ago.  I did use clobetisol (sp) before I knew what it was - my derm did not have a clue - after searching the web I diagnosed myself and was then biopsied. FFA and LPP.  I have taken milk thistle ever since that time.  The stopping of the SPF and mineral makeup was probably between 1 and 2 years after diagnosis because at that time there was very little information.  I take 5-HTP for stress - 2 - 100mg tabs a day - and due to recent information have added 3 stomach enzyme probiotic tabs a day as well.  I have totally changed my diet and only do bottled water.  I am inactive for about the last two months - but I have been headed there for a long time. I am able to brush my hair - hardly ever lose a hair - no strange sensations, burning or itching, no raised papules on the hair shafts.  I only lost hair about an inch all the way around initially. I thinned out but do not wear any hairpieces - I am telling you all this to give you hope - the inactivity may only last for awhile but I am focusing on staying positive and trying to encourage those of you who are still active.  I beg you to try any of the things that you read on this sight or the other sight I mentioned - many dermatologists still know nothing about this disease - remember it is very rare.  I live in Arkansas - I am in the process of scheduling to participate in a new microbiome study at Columbia - check out your local teaching hospitals in your area as there are studies being done.  Good luck and do whatever it takes to stay positive and reduce as much stress as you can (including giving yourself some time off of either website so you do not go crazy LOL)

Permalink Reply by Wompoo on January 14, 2018 at 10:05am

Facebook site? What is the name?

Permalink Reply by Joy on January 14, 2018 at 9:33pm

LPP Lets put out the fire - facebook that address and click on the info tab - you will find an email address to email your info

Permalink Reply by ElizabethRYT on February 18, 2018 at 7:49am

My dermatologist told me the same thing 4 years ago when I was diagnosed.  She prescribed a cortisone spray at the time, which I used for about 6 months.  I have not noticed any further hair loss, but the damage was done by the time I was diagnosed.  My eyebrows are gone, and temple hair around my face.  I also use Rogaine, which has created some very fine hair around the hairline.  The dermatologist has said that the areas that were scarred will not grow hair at all, so the effects of the Rogaine are hit and miss. I suppose that I have just learned to live with it.

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