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Comment by Paula uk on March 20, 2013 at 2:24pm

HI ALL ,
I'm new to this site. Recently diagnosed LLP /FFA. Very similar to Caro ,only for me it was my eyebrow that I first noticed gaps in .That was around September. Then November I noticed / realised I had thinning above my ears almost patch type loss.Forehaed and face skin silkly and smooth.Derm. Prescribed Elocon cream for eyebrows and nizoral shampoo for scalp.On a second visit in December she referred me to DR Fenton in London .
So after blood and hormone tests and biopsies I was diagnosed last week.
MY medication is Prednisolone course over 40 days,8 x 5 mg for 5 days then 7x5mg for the next 5 days and so on. daily Etrivex dry shampoo and Elocon lotion direct to scalp shampoo and lotion on affected areas only.
I can't say I had a major stress in the last two years - my dad passed away 16 months ago but I genuinely can't say that was a trigger , I did change birth control pills maybe two years ago.
I have been lucky , in so far as I had a lot of hair to begin with ,and changing hair style means my hairloss is not very visible to others!

Comment by Caro UK on March 17, 2013 at 7:45pm

I am so sorry you were so ill Celia. It must have been a dreadful time for you and your family. As you say, it would be helpful to know what others think csused their alopecia.

Comment by Caro UK on March 17, 2013 at 1:57pm

Hello Celia. Yes I would love to come. Thank you!

Comment by Caro UK on March 17, 2013 at 8:53am

Hello, I'm new to this group. I have LPP. I joined the FFA group recently. I was recently diagnosed from biopsies taken in January. It has been an anxious few months waiting for the diagnosis. I noticed my hairline was receeding around September of last year and my forehead was completely smooth and white where the hair used to be. About an inch of hair has been lost. Also hair has disappeared from above my ears and becoming sparse on top. It has always been very fine but not noticably so to other people with use of good hair products, colouring and cutting I could make it look OK. At the same time I noticed that I was losing hair from my eyebrows. Now I have hardly any eyebrow hair left. I started treatment two weeks ago with Hydroxychloroquine 200mgs daily and Dermovate scalp application. I had already learned a lot about FFA and LLP and current treatments from reading posts on the FFA group and I was not suprised when he gave me the diagnosis as I'd been expecting it. I have been looking back on my life over the recent past and wondering what was the trigger for this condition. I started a very stressful and pressurised job two years ago. Up until that point my hair and eyebrows had been OK. Maybe my job has been the cause of me developing LLP? Has anyone else felt that stress has caused their LLP?

Comment by Amanda on February 18, 2013 at 10:09am

Hi Rosie,
Sorry, I too wasn't on here for awhile. I think that I am slowing down. I do have crappy days still. I just came off a high sugar, some alcohol and fatty food week end. I feel gross, understandable, and feel like I had some shedding last night. Maybe it is just in my head. I have to go back to the salon because I have noticed that when my roots grow in and my hair gets too long (and stringy) it looks bad. This seems to correspond with my hair blues. I have to keep on it because it makes me feel better about myself.

Comment by Rosie on January 2, 2013 at 4:49am

Happy New Year to you too Amanda ! Do you think maybe your LPP has slowed down now then? I did go sugar free for a while, but it was too difficult & the results weren't dramatic enough for me to carry on! I'm just using Oilatum shampoo at the moment and nothing else. I'm being a bit of a rebel with my medication!!

Comment by Amanda on January 1, 2013 at 7:52pm

Happy new year everyone!!!
Rosie, I have been trying to limit inflammatory foods like sugars, processed and wheat. So hard! Hoping that new years will keep me on track. I have been feeling pretty good these days with my hair. Not getting worse. I did notice that while I was on vacation in humid Cayman Islands, I felt amazing!!! And I was washing the salt water out of my hairs a couple of times a day. As soon as I came back to the very dry and cold weather here in Toronto, my scalp was on fire!!! Calmed down a bit now though. It was horrible. Hope you and everyone are having a great new years day. Here's to health and good hair days on 2013!

Comment by Rosie on December 4, 2012 at 2:48pm

Hi Amanda ! Sorry, haven't been on here for a while. I've had my results and it is definitely LPP. Could be worse, but could also be better. I'm due to go to the dermatologist on Thursday to discuss treatment. My iron is really low - it's supposed to be 80+ for good hair growth & it's 29 !! I'm really concerned about steroids, and I know they are going to suggest that. Oral steroids give a risk of bone weakening & I already have rubbish bones (I had a bone density test a while back), and osteoporosis is in my family. Not sure what I'll do yet, but I am a big 'reader', and I'll be sure to google any treatments before I take them ! I have a brilliant human hair piece that is just like a clip on, that I wear along the parting, with a hair band over the top. It works fine at the moment. I got it from Trendco in London (I'm from the UK). Weirdly, I don't really have a lot of itching. I was dairy/gluten free, but now I'm just gluten free, because I need the calcium. I don't know if this helps, but it feels like it does?!! What is your anti inflammatory diet?
Photo looks great btw ! x
Celia - yes, FFA is a variant of LPP....

Comment by Amanda on November 9, 2012 at 7:34pm

Rosie, welcome! You are in the right place! I have LPP and have hairloss on the crown and top back. Know how you feel and only do ponytails with hair pulled back and headbands. No more parts for me!! For me, the meds have halted the scarring from getting worse. I know someone with LPP same as us that wears a postiche/topper or hair piece. You can get them in the mean time before you may need a full wig. Continental hair has them, not sure if you are in Canada like me. I am experimenting with an anti inflammatory diet these days. Going to see if it will further reduce the itching and inflammation. You can also get someone like Continental to match the piece to the hair you have left and cut and style to make it look good. I am about to make an appointment soon myself. You will find lots of info on this site. Take care and good like!

Comment by Amanda on November 9, 2012 at 7:24pm

Debs, glad you found the group! Options are sadly limited for scarring alopecia. Period. We have to stick together for up port. Take care and good luck!

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