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Lichen Planopilaris
Hi there. I am new to the Alopecia world and i am finding it extremely difficult to come to terms with the condition i have been told i have :((
My name is Karalina and i am a young healthy 53 yr old woman who eats well and is a fitness enthusiast, outgoing and loves life and lives in London.
I have just recently been diagnosed with Lichen planopilaris and frontal fibrosing Alopecia in October 2016, after having a biopsy taken. My symptoms started earlier in the year around Jan when i noticed my hair thinning at the front, and itching.
My Doctor was very blase and dismissed it to being connected to my hormones after just being told i was in the menopause, she said it should correct itself!
I had blood tests taken as i also started to feel extremely tired, i was told my iron and vitamin D counts were very low and was advised to take supplements of which i am now taking. I also decided to start on HRT as herbal products did not seem to work.
I presumed all would correct itself, as the HRT helped me considerably along with the supplements in regards to tiredness, but my hair continued to progress rapidly. I now have quite a large bold patch at the front which is continuing to progress back and across, and around the side of my ears.
I am extremely concerned, worried and very upset this is just going to continue and i end up loosing all my hair,it has really affected my well being and made me more stressed which prob does not help (a vicious circle).
I am taking Hydroxychloroquine 200mg twice a day, along with using Betnovate on my scalp once a day. I was also advised to use Minoxidil which i did 1% for 2 months it made my scalp burn around the ears and my hair started thinning more so i stopped using it, i don't know if this is right or wrong??
I don't feel the treatments i am using are working, the condition is progressing and i am at my wits end, i'm just sooo upset! I just want to cry!
I don't know why or how? i have got this disease and there seems to be little info on the web. I did go through a stressful period for a few years, but i eat very healthy and excercise.
My consultant doesn't seem that helpful and says he has patients with very little stress who have this condition. It's very confusing and difficult to understand or manage?
I'm thinking of paying privately to see a Dermatologist and for a nutritionist/ hormone consultant to try and eliminate or get to the root cause as no one seems to know??
It's really frustrating that there seems to be no cure or little to stop the progression of hair loss:(((
I would be extremely helpful if anyone could share some useful advice/tips or recommended some good wig suppliers. The thought horrifies me!
Karalina x
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Comment by Debs on January 8, 2017 at 7:32am
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Hi Karalina I too am diagnosed with frontal fibrosis alopecia. I am currently on doxycycline and clobetasol propionate gel and have taken cortisone shots. Nothing is helping me my hair is slowly continuing to fall out. My doctor suggest getting checked for lupus. I did I don't have it. there is a medicine she said that might help plaquenil however she wants me to run it by the dermatologist first. Perhaps you want to get check for lupus. I am truly sad with all this may god heal all of us
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Hi Karalina I was also diagnosed with FFA in Oct. 2016. Dr. Christos Tziotzios, Dermatologies in London at St. John's Institute of Dermatology. He and his team are collecting DNA samples from patients diagnosed with FFA. The aim is to understand the genetic basis of this distressing condition. To participate in the research or for any questions contact christos.tziotzio@kcl.ac.uk.
Check out this web site www.carfinti.org
The Cleveland Clinic here in the USA is participation in this study I have appointment need month with Dr. Wilma Bergfeld.
If you live in the USA and wish to participate in this study go to www.carfinti.org. you will find a list of Dr. collating data.
I'm traveling 5 hours to Cleveland, I just feel like I have to be part of a solution. I'm choosing to stay positive and hopeful. My hair dose not define. I know someday I will want to wear a wig to cover my hair loss. But it will be the sassiest wig I can get my hands on.
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Hi Karalina
Do not give up !
I am on Hydroxychloroquine as well as the clobetasone shampoo and mometasone fureate. My condition is still active but it has slowed down. I take photos every year or so to see how much hair I have lost and I am still loosing hair.
I am reading a book called "living well with autoimmune disease" and It has opened my eyes.
After reading the book I felt encouraged to try acupuncture, early days to say it helps but I am hopeful.
I will keep using hair vitamins, minoxidil, etc as I believe that if I need a hair transplant sooner or later I would need my hair on other parts of the head stronger to be able to move them to my front. At the moment I use a fringe but it will not be sustainable for longer. Any suggestions on a wig brad or maker in the UK or Europe?
Dr. Christos should publish his findings soon and I look forward to read them.
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