Comment

Comment by sallylwess on August 4, 2017 at 4:02pm

Brooke, that is fabulous news.  Also, it is great information for the rest of us.  Liz, I appreciate the information about the loss at the nape of neck also.

Comment by Brooke on August 4, 2017 at 2:15pm

I don't post often but do follow the FFA discussion.  Just want to share a ray of hope in my journey with this disorder.  I was diagnosed about 4 years ago, although I probably had FFA longer and have been taking plaquinil and antibiotics, plus steroid scalp injections since diagnosis.  I recently stopped the antibiotics because of concern about long term effects.. Hair loss has been slow; I've lost about 2.5 cm of hairline, especially around the forehead.  In the last couple of months I've been using liquid tacrolimus which I spray along the hairline once a day.  Tacrolimus is an ant-rejection drug used for people who've had organ transplants and according to my doc it is very safe for this application. 

I went to the dermalogist yesterday and for the first time ever she noticed some regrowth!  It won't likely bring back the hair I've lost but I'm hopeful that I may not lose a bunch more.  Best wishes to all of you brave people!

Comment by Halfbakedwho on August 4, 2017 at 12:05pm

Thanks Liz that's very interesting. I've been told my lacrymal ducts are "sclérosés" (scarified) and that it's a local not systemic problem, but that being said there's obviously a systemic issue when your body is killing healthy tissue. I don't think I'm losing hair at the nape of my neck, but the weird thing is the loss of sensation where my hair is gone, over my ears. Scar tissue...

Comment by Liz on August 4, 2017 at 8:51am

Hi :)

I have spoken with my dermatologist (who is also researching causes of Frontal Fibrosing Alopecia) this week about the hair loss on the nape of my neck and also my dry eyes.

He says that hair loss on the nape of the neck is relatively common in people with FFA and especially so in people who are not on any treatment.

Also he says that dry eyes are reported in FFA too especially in connection with Sjogren's syndrome. He also says that given that the fibrosing process does effect the eyelids it may be that the lacrimal ducts are narrower and affected too.

Hope this is helpful.

xx

Comment by Gai on August 2, 2017 at 6:39pm

Thank you classical Anne, it may all just be coincidence at this stage, but the supplements and diet have helped me feel so much better. I think environmental exposures may be the start of autoimmune issues, and they are probably different for each person. This is a great website, as there are lots of avenues to explore, and people to speak to, especially what others think may have caused their hair problems and how to cope. I still have sad days when I look at my hair loss too, but am trying to be positive.

Comment by Classical Anne in NC mountains on August 2, 2017 at 11:43am

Gai, congratulations on finding what really works for you!  I truly hope you can ward off any further autoimmune issues.

Comment by Gai on August 2, 2017 at 4:47am

Hi, like many posts before me, anecdotal evidence might eventually join the dots. Let's hope so anyway. I have had hashimotos, ibs, and many other gastrointestinal complaints for over 10 yrs. After having a large dental amalgam replaced 3 yrs ago developed FFA and lichen planopilaris within the month. I saw a dermatologist but have decided not to use medications as they all seemed to have side effects. I have changed my diet to be gluten and dairy free and that has helped my ibs. I also take a very good multi vitamin supplement (dr strength) Probiotics and a digestive enzyme which have all helped enormously. I also take turmeric capsules which are antinflammatory in an attempt to stop the development of any more autoimmune diseases.
I have also finally found a doctor who is interested in the cause not just a pill to mask the symptoms.
So far I have been following this for 18 months and have had no further hair loss. The LPP still flares occasionally usually stress related, so I am working on that.

Comment by Jules Australia on August 1, 2017 at 7:18pm

1. I have suffered with dry eyes ( blepharitis) for a good year or so just prior to the onset of ffa/lpp symptons which was Oct 2012 when i first experienced severe burning tenderness/pain over my scalp (espec on top) & itchiness & creepy crawly sensations along frontal hairline (forehead) & shedding. 5yrs on & the hairloss continues. Also get v sore tiny papules (?or pimples) that come& go all over. Believe i have diffuse LPP as well as FFA. The dry eyes problem is awful but forsome strange reason i haven't had it for a couple of yrs now except, just stopped. I havenever taken any drugs for the ffa/lpp. Just all seem so harsh & didn't want to risk poss side effects etc;my symptons have waxed & waned just as they seem to with those who have taken meds. Was bad about first 18mths then really slow & mild symptons from about April 2015 to March 2017.....then i seemed to have what seemed to be a flare ('out of blue'); the scalp tenderness pain & itchiness became more intense (&had more shedding than normal)..... just such a horrible disorder; at times is so unsettling...sorry to here all these other complications you r all having....i feel many are likely connected also...i have heard dry eye syndrome is commonly accompanies autoimmune diseases but also becomes more prevalent in menopause....trying to connect the dots sometimes 'does my head in'....

Comment by CarolJ on August 1, 2017 at 3:23pm

Liz, in my opinion all of the diseases that have been talked about here ARE realated. All related to the fact that there is systemic inflammation going on throughout the body amoung other things. I would highly recommend finding a Functional Medicine doctor! They specialize in getting to the root cause of disease not just treating symptoms. This approach has worked well for me! I wish you all the best!

I believe there is a website functionalmedicine.org that you can put in your zipcode and find a doctor near you

Comment by Anne55 on August 1, 2017 at 3:21pm

Liz, I agree with Classical Anne. You need to stop the antibiotics ASAP. They destroy intestinal flora and give rise to Candida Albacans.

• ‹ Previous
• 1
• …
• 142
• 143
• 144
• 145
• 146
• …
• 507
• Next ›
• Page