Replies to This Discussion

Permalink Reply by Pauline on February 10, 2015 at 2:03am

Hi there, just to let you know that I have seen your post and can totally relate to everything you say and have gone through! I am 52, diagnosed just over 3 years ago after a biopsy but now know that FFA had started a few years before this. I was on x2 tablets of hydroxy since Dec 2011 but after my visit to Dermatology in November last year, they suggested I tried cutting to x1 tablet per day. However, I have been experiencing more itchiness and irritation and like you say, the creepy crawliness which makes me fear that the condition is flaring up once more. I am going to ring and suggest I go back onto the x2 tablets per day. I really feel for anyone who has this terribly un-feminine and soul destroying disease; it just doesn't seem fair.

Permalink Reply by Jules Australia on February 11, 2015 at 10:47pm

Thx Pauline for your reply I have decided not to go down path of taking strong meds as believe it too risky, have had v good health for all my life,so far; thought about hydroxychloroquine but eye toxicity risk for something that unproven to work, well just not willing to go there. Guess each of us has to make our own decsions as to what works best for us, making no judgements on what anyone else chooses to do. We all have to walk our own path &dealing with this is "no walk in the park".My pattern seems to be diffuse lpp (general thinning over top & generally all over).Had really thick hair so amazingly still have reasonable amount; as well as ffa (around/above ears and frontal bi-temp). As often described it seems to be slow moving, but is still v different to how it was. Although nat wavey/soft curly b4, the quality & structure has changed for the worse. As some others have described it has become more kinkey,flat frizzy. I have found from researching ffa/lpp that hairshafts appear dystrophic as in acquired pili-torti like (twisted hairshafts). Described in Lpp as consequence of fibrosis in the follicle.

Permalink Reply by Pam on February 10, 2015 at 5:02am

You will find this group a great support, as we all have experienced similar issues, and are all having to deal with it one way or another.

It is distressing and not easy to cope with, but at the end of the day you need to keep going, and keep strong, and realise that there could be worse things.

Sharing the problem with fellow sufferers has been a great help for me, and I do thank the other people who have started the group, and helped me on the way to feeling better about it all.

Best Wishes

Pam

Permalink Reply by Plain Jane on February 10, 2015 at 9:07am

Hi Jules. You are right; it is a nasty, distressing disease. I am 60, diagnosed by biopsy with LPP in 2012 and since then it's just been a runaway train. I have tried every medication there is without any improvement in symptoms. Some of the meds I tried just gave me additional problems. Finasteride gave me chronic dry eye syndrome, for example. Doxepin made me gain 10 lbs. And of course, since it's common for one autoimmune condition to evolve into two, and then three, things can always go from bad to worse. After 2 and a half years of living with my scalp on fire with LPP and wearing a hat whenever I go outside, I now have flaming cheeks and burning, bloodshot eyes. Yep! Just got diagnosed yesterday with  rosacea and blepharitis (ocular rosacea.)   So now I'll need a ski mask and sunglasses to go along with the hat. I will definitely look like I'm about to rob a bank! : )) It's easy to get discouraged, and feel sorry for yourself, I know. But we have to keep our sense of humor, encourage one another, and use the opportunity to become individually stronger. As a side note, the best thing I did (after reading about others' experiences on this site) was to get my eyebrows tattooed. Expensive but so worth it - made me feel so much better about my appearance. Hang in there and don't let the medical community get you down. They are only "practicing"medicine after all. : ))

Permalink Reply by Blondie on February 11, 2015 at 10:35am

I can relate to all your feelings - I am 57 and dealing with ageing parents / mum with alzheimers/ care homes /social services as well as a full time job and feel all these stresses may be the cause - I had to self diagnose as got no where with GP and have had a consultation with a lovely Derm who has given me steroid jabs, Planquanil and some ointment - I have also changed my hair style to a 'heavy on top' pixie - love it and have had many compliments - I have only lost a circle at the front and a small bit by each ear (so far) felt devasted at first - really dark place, but I love life and seeing what my parents are going through want to enjoy it as much as I can , I have great sons, husband,  friends and family so I got myself to thinking -,'I could be miserable and lose my hair or I could be happy and lose my hair..or my FFA may not get too bad and I have been miserable over nothing' So I am doing the treatments, eating healthily, taking supplements and trying to live life to the full....have times when I get all worried and upset about it, but try and get on with it as best I can