"Pascal, Elidel helped with mine! They were only starting to thin (and I had a bit of a hole in one of them), but I think the Elidel arrested the loss and filled in some missing parts. They're definitely not as big as they were before, but I am…"
"I am in the same boat as you are. I finally stopped reading all the posts on here even though I found them so informative and helpful, or at least insightful, in the early stages of finding out just what was going on with my hair. I…"
"Annie May I think tat some of us have Diffuse LPP as well as FFA. Some of the articles on LPP describe scalp hairloss as most often multi-focal areas (that often eventually join up) OR more diffuse; also that the nape is often an area of involvement…"
"Hi all, so far I have been spared the itchy scalp, it sounds absolutely horrid, painful and worst of all I imagine a constant reminder of the horrible condition. Thanks again all for your info, advice and support, I have a pharmacist review re…"
"I am SO thankful to have you all here. This disease is so bizarre and awful that I don't know what I would do without you.
I don't understand the variations between us either. As you said most of us have the creeping forehead…"
"Hi Agneta, If I ever get the chance to travel to your part of the world, I'd come visit & give you a huge hug....and yes coolness of the scalp (& body temp)certainly seems to help calm the eerie discomfort & odd scalp sensations…"
"Agneta, I am struggling too. I experience the wierd scalp sensations, sometimes tender, sometimes creepy itchiness,and my hair texture has changed, feels awful. Besides ffa, i believe i have diffuse lpp and scattered all over scalp as i get really…"
I'm also so grateful to have this site. I've struggled with this B*****. ffa issue for YEARS, not knowing the cause, thinking it was only me, wondering why my own immune system was 'attacking me' etc. It's…"
"Hi Agneta, not brave at all, just working through the process of acceptance, some good days some bad, of course and in denial thinking that maybe I am going to be one of the lucky ones- and the disease just suddenly burns it self out and I…"
Yes HUGE gut symptoms, bloating, not 'regular' etc. Diagnosed with leaky gut. I read as much as possible , great book is this one by Dr Michael Mosley " The Clever Guts Diet: How to Revolutionise Your Body from the Inside…"
"Hi illistr8r & Liz love, great to have open dialogue, at the moment I am being brave..but also realise I am heading down the path of wigs and microblading eyebrows. At that stage I look forward to your "wig wisdom" Liz, as…"
"Hi illustr8rI also was late getting diagnosed and decided against meds that most likely wouldn't work for me anyway. I've lost so much hair it looks ridiculous! BUT THAT made the decision for me that I would wear wigs- full time and my…"
"@Beez and PFl Thank you for your comments about being medicine free. I question whether I should have done more-like getting the steroid shots or trying Plaquenil-but my gut told me it was useless. The side effects are worrisome and exaggerated in…"
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