Possible causes?

Hi All

I'm Lara, 38 years old and I was diagnosed with FFA in September this year after noticing what appeared to be male pattern baldness starting around 8 months ago.

My GP got the diagnosis wrong which led to a short delay in diagnosis but reading up on FFA I suspect that the delay won't mean anything given the lack of a definitive treatment anyway.

My derm started me on lymecycline and dermovate. I briefly tried Hydroxychloroquine 200mg a day increasing to 400mg a day but got a rash and blurred vision so have stopped that again for now. I was only on it for about 3 weeks anyway.

I have also started the AIP protocol and have been on that for about 5 weeks.

So far the hair loss appears to be worsening despite the above and I am due a biopsy in a couple of weeks.

Reading all your posts, the studies and thinking back on what I may have done to cause this I have come up with the following:

1. For about 7 years I used micronised benzoyl peroxide for acne. There seems to be a suggestion out there that modern cosmetics and micronised particles especially may be a factor.

2. I used factor 70 sunblock daily for about 4 years along with intermittent topical isotretin for acne. Sunblock also appears to be a suspect in this crappy disease.

3. I had a hysterectomy (ovaries have stayed)3 years ago for suspected adenomyosis (which histology then showed I didn't have). Wish I'd never had it done but on the plus side I non longer pass out with pain each month. I was told that it would bring on the menopause 2 years earlier but as we all menopause at 59 ish I figured that would be fine. My oestrogen is low apparently though so that might feed into the FFA too.

4. I used steamrooms on average weekly for the acne.

5. I drank a lot of coffee - not sure if anyone else is a caffeine hound. I have switched to red bush tea which just tastes like a cup of sadness!

6. I'm a stress head. I know autoimmune conditions can be worsened by stress so I should try to do something about that however the universe in it's a**hole wisdom decided that my dear mother should be diagnosed with a bad inoperable cancer the day after I was diagnosed with FFA so stress control is unlikely to be coming to me anytime soon. The stress might also skew my response to treatment and dietary changes so my progress, or lack of,may not be representative.

I thought I would put down the things that might have caused my FFA in case we share any common elements that might help narrow down what the hell is going on here.

I've not posted earlier but have found the info here really helpful so thank you.

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Replies to This Discussion

Permalink Reply by Embo on January 6, 2017 at 2:55pm

I traveled all the way from New York to donate my blood sample with Dr. T. So happy to be part of the research and look forward to learning the results!

Permalink Reply by DragonandFox on December 4, 2016 at 5:46pm

Debs,  I see a Dr at Columbia Presbyterian in NYC and she and her team just received a grant to study, Lichen Plano Plinaris which is the Mother medical term for FFA and other such diseases.  She is working with the #1 person on Planet earth who knows about this disease.  it's very rare and yes, there's never been proper research until now.  I know there's someone at Guys in London, I wonder if he's in touch with Columbia Pres?  Do you know?

Permalink Reply by Embo on January 6, 2017 at 3:02pm

I would also like to know the NYC Doctor's name at Columbia Presbyterian. Please share.

Permalink Reply by star on December 1, 2016 at 5:08pm

Simple question do any of you know your blood type e.g positive or negative......I'd be fascinated to know?

Thank you

Permalink Reply by Lara79 on December 1, 2016 at 5:19pm
I don't know actually - probably should though!
Permalink Reply by star on January 6, 2017 at 3:04pm

I'm b- too...i still wonder if this might be a contributing factor

Permalink Reply by Vicki on December 5, 2016 at 1:10pm

Hi All

I went to see Dr Christos T at Guys today to give a blood sample.  He confirmed I have Lichen Planus/Lichen Planopilaris.  Not only telling me how rare it is, he said I was rare as the patern of mine is different, my whole body is affected and that I am young to get this (I am currently 47 but this has been going on we worked out since 2011).  Although it was good to talk to him it has left me feeling very down!  I have chronic hairloss (bald at left temple and at crown), receding hairline,  my hair is so thin I have shaved it short (ridged nails and toe nails), my scalp itches and burns, my body itches and clothing irritates my skin.  I was being treated for MCTD and possible lupus so the drugs I was taking would be the same for LP and FFA.  The medications I have been on is hydroxchloroquine (plaquenil.  I started this in 2013 at 200mg for a year and then increased to twice daily.  I stopped this 3 months ago as my eyes were feeling blurry and strained.  I have also been given prednisolone, and I tried mepacrine with plaquenil, and for a short time (7 weeks) aziathipronine (sorry if I have spelt that wrong). A biopsy showed I had LP but it was ignored as they thought I simply had an autoimmune condition like perhaps lupus.  Sorry for rambling but I am now at a loss what to do next and who to see.  Do I continue with my rheumatologist or do I find a dermatologist who knows all about LP and FFP?  Does anyone know of a specialist/professor/doctor who is an expert in LP and FFP?  I just want to see someone who can help me properly.  I literally feel so low.

Permalink Reply by Kathy in Denver on December 5, 2016 at 1:36pm
Vickie my heart goes out to you. I am sorry I do not have any help to offer. I am new to this and trying to figure out my way as well. I wish I could give you words, anything to ease the pain. I am here to communicate if you need it.
Permalink Reply by Vicki on December 5, 2016 at 1:39pm

Thank you Kathy - all such a nightmare!

Permalink Reply by Lara79 on December 5, 2016 at 2:08pm
Isn't Matthew Harries in Salford the man to go to? I haven't but I see his name a lot so maybe the ladies that have seen him can give you a steer?
Permalink Reply by Vicki on December 5, 2016 at 2:40pm

Just looked him up and this is his profile

Dr Matthew Harries

 
 
Dr Matthew Harries received his medical degree from the University of Leeds, UK (1998). In 2001, he gained membership in the Royal College of Physicians of London, and in January 2003 took a post as a Specialist Registrar in Dermatology in Manchester. During training he took time out of programme to study the hair immune system in primary cicatricial alopecias, working as a Clinical Research Fellow at the University of Manchester, and a visiting Research Fellow in Experimental Dermatology at the University of Lübeck, Germany. He was awarded a PhD from the University of Manchester in 2011. He now works as a Consultant Dermatologist at Salford Royal Foundation Trust in Manchester and is an Honorary Senior Lecturer at the University of Manchester. He has a special interest in hair loss disorders, in particular the scarring alopecias, receiving specialist referrals from around the region.
Permalink Reply by Airam-FFA on December 6, 2016 at 9:21pm
Hi Vicki

I am new to this too. I was only diagnosed with FFA last week ( although the hair loss around my hairline has been going on for several years)
and am seeing Dr Christos on Thursday. Maybe he knows who the FFA/LP specialists are?

I am reluctant, at the moment, to take the medication that I have been given as there seems to be so many side effects (?Dermovate cream (so thick, I think it will rub off my fine hair) and Dioxycycline tablets. The AIP (autoimmune protocol) diet seems a good idea and I saw an acupuncturist yesterday who says that my body heat is too high; my ying is ? low - I will have a course of treatment together with Chinese Herbs.

Like many on here I am very down about the diagnosis and am desperate to find a solution.
xox

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