Replies to This Discussion

Permalink Reply by SandyA on April 2, 2017 at 12:57am

Yes, I do. That was actually the first symptom I noticed even before the receding hairline but I merely chalked it up to clogged pores and ignored it. It was when a rash started to appear on my neck and then spread to my face (at first the rash was red but then became hyperpigmented over time) did I go to a dermatologist and quite by accident was diagnosed with FFA. The derms were absolutely stumped by the rash and said it was totally apart from the FFA but I was convinced all the symptoms were connected.

One allergist I went to see (about other symptoms in addition to the red rash) to rule out allergies was fascinated with my"chicken skin" and said it appearted that the hair follicle was extremely inflamed thus giving me my first vindication that the skin problems were associated with the FFA.

Several months ago, I believe someone here had even posted a journal study which definitely correlated facial skin irregularities with FFA. (sorry, don't have the link).

Anyhow.....just wanted to share that you are not alone. (btw....I do not treat this symptom with any medication but still notice that the "bumps" seem much more raised on some days than others)

Permalink Reply by Jacqui on April 2, 2017 at 8:18am

I can't help with the other but I do feel like my hair is a different texture on top.  In fact I noticed this before I ever noticed the hair loss. 

Permalink Reply by GEMINIJEANNE on April 2, 2017 at 11:47am

 Funny thing that you should post this question. I noticed this rash several weeks ago on my chin area and around my mouth . It is exactly the same - looks like clogged pores or similar. I tried cortisone creams but so far nothing seems to help ! Now I use a teatree astringent and just pray it goes away eventually. This disease is never ending in symptoms . I am constantly finding out new info on it or new changes that seem related. 

Does anyone out there experience their heads hurting or sore to touch. The top of my head is sore always - not sure if it is a related problem. I seem to be in a active period right now because I constantly have the irritation cropping up on my scalp. It just doesn't want to go away.

Permalink Reply by Jules Australia on April 5, 2017 at 6:52pm

Hi GemeneJean  yes i have scalp pain, very tender over top of my head, i think this is related to the inflamation activity in & around the hair follicles. Sometimes i get the small papules on scalp that can feel quite sore. I've experienced the itchiness, especially at front of hairline. It is a horrible feeling & makes it very hard to put out of your mind the fact that we have this chronic disease. I've hadd ffa/lpp for about 4 & half years now,pain symptons were horrific at onset but eventually eased off after 6 months continuing to a lesser degree for about another year, & for the past 3 years (until recently) the tenderness was so suttle was much easier to get on with daily life without thinking about the ffa constantly. The hairloss continued but was very slow. Recently flared up again with pain & more loss......I am now thinking of seeing a professional hairloss/wig clinic for fear of what may be ahead.....sorry for what is happening to us all.... smetimes feel very alone with this condition.....but reading all of your comments makes you realise manny others are suffering huge challenges with this also...thanks for the support from all on this site

Permalink Reply by Anne Louise on April 2, 2017 at 10:55pm

I have this on my forehead and chin, so annoying! I'm turning 50 in the fall and feel like I have aged 15 years in the past 3 years since I was diagnosed. I have always looked much younger than my age, so this has been so difficult. I did read somewhere that this "rash" is associated with FFA...the fine vellus hair follicles are inflamed.  I have been using emu oil for about 5 months but haven't noticed much improvement. I feel like I need to do something so I don't feel so hopeless, but I gave up on Plaquenil, doxy, Clobetasol and just play around with more natural approaches like emu oil and magnesium oil.

Permalink Reply by sallylwess on April 3, 2017 at 6:17pm

Anne Louise, I so agree with you on how much this disease ages one.  I am 72 years old and have lost about two inches of my frontal hairline and my eyebrows.  The loss of hair and eyebrows changes your face in so many ways.  Even with hair pieces, I don't think the aging effect is softened that much.  

Permalink Reply by Classical Anne in NC mountains on April 5, 2017 at 9:43am

How interesting!  It was just a facial rash that finally sent me to a derm several years ago.  She immediately saw ROSACEA, but something led her to do a plug biopsy at my hairline.  I was shocked when she called to report the [then] terrifying diagnosis of FFA.  But she [derm] was shocked to also report a diagnosis of cranial RINGWORM -- she said she had never seen that on an adult, and we couldn't find any probable cause.  Those 3 simultaneous diagnoses were tough to handle at first, but I have more or less accepted the apparently incurable  rosacea and FFA; and of course a specific Rx quickly cleared the very strange occurrence of ringworm.  It is totally weird that something as tiny and apparently benign as a hair follicle could be related to so many issues.

Permalink Reply by sallylwess on April 3, 2017 at 6:22pm

You photo captures the "rash" that I have on my chin and around my mouth.  Mostly it is on my right side of the face.  I have rosacea on my cheeks, but that causes a different look, and I can control it better than the rash.  The rash goes with FFA according to my derm.  This article might be helpful to you?

http://jamanetwork.com/journals/jamadermatology/fullarticle/1105186

Permalink Reply by Charlotte on April 8, 2017 at 7:37pm

Hi Ruth, thats how my skin looks:-(
I just found this: https://www.researchgate.net/publication/315464733_Successful_Treat...
My derm gave me "ISO" 3 years ago, thinking i was having rosacea. It made my Skin Look better, but my bumbs came back as soon as I stopped taking iso ( i have no idea how long it is "Safe"to take this drugs??? I have to Talk about this with my newest derm

Permalink Reply by Anne Louise on April 8, 2017 at 8:06pm

Charlotte,

Thanks for sharing this article! Even though it was only 3 patients, the response is remarkable. I haven't seen my derm in well over a year, as we've tried all the usual treatments. I will make an appointment now...this gives me hope that at least one aspect of this dreadful disease may be successfully addressed.

Permalink Reply by Kayla L on April 11, 2017 at 2:40am

Hi!

I have acne but I'm not sure if I have other skin problems.  I have to make an appointment with the dermatologist.  I know that having acne makes alopecia harder.  I also was diagnosed with thyroid cancer and the surgery went well. I think, that's also the cause of my alopecia and need to get checked.  It's alopecia areata, it's 8 years, now that I have it and wear a wig. Your welcome Ruth!

Permalink Reply by Leni on April 16, 2017 at 12:29am

That's my skin too and I've noticed it gets worse by the end of the day. Skin was much better on the AIP diet, but I've been cheating.

I tried retinoid products and they helped some.

My latest success has been with salicylic acid. Scalpicin on my scalp for pain (works like a champ) and a toner (blue solution )CVS brand had seemed to have minimized the papule rash on my face.

Please let me know if you have the same result. Is this a temporary fix or not.

I can send a picture of the toner If interested.

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