Replies to This Discussion

Permalink Reply by Leni on May 15, 2017 at 6:23pm

I was told accutane users were not good candidates for microbladig. Must affect the skin somehow so it doesn't take. Not really sure. The Retin A product must be kept away from the eyebrows. It will fade them.

You may want to research the accutane prior to takin it.

I find that the salicylic facial washes and astringents help a lot with reducing the papule inflammation.

One thing I'm curious about is asprin. It is a salicylate, related to salicylic acid. Would regular doses of asprin help?? Any baby asprin user out there that could give us some feedback??

Permalink Reply by Charlotte on May 16, 2017 at 5:08am

Thanks for your help. I ll definitively try the salicylic products

Permalink Reply by Oddtimes83 on June 3, 2017 at 5:25pm

Hi Ruth. I was recently diagnosed with FFA, and while my skin's texture has become rougher, I don't have the papules. However, I have been doing a ton of research and trying to read original studies in hopes of finding what it most likely to slow progression. While doing so, I came across this study. It appears the use of oral isotretinoin was very successful in the treatment of facial papules of three individuals with FFA. I'm attaching the pdf, but if you can't read it, go to Google scholar and search for "frontal fibrosing alopecia papules" and filter the results so only those from 2016 or later are showing.

Attachments:

• Pirmez et al. 2017-Successful Treatment of Facial Papules.pdf, 1.9 MB

Permalink Reply by DragonandFox on May 13, 2017 at 10:57am

Don't be sorry Charlotte!  it's a terrible thing!  It does seem for most of us the disease does not stop at just Frontal Fibrosing Alopecia!  Seems many of us have multiple issues and often variants of things.  So, Facial papules?   Such as acne?  I've had tiny papules under the hair line recently when I stopped applying the Clobetasol for 3 weeks. it was AWFUL!  Looked like the skin was bubbling up and forming a scab which is exactly why this disease is known as "scarring alopecia" and many of us can't wear even scarves without it bothering us, let alone Shave our heads or wear Wigs!!

Anyway, I'm 99.9% SURE your dermatologist is WRONG about that!  Change Dermatologists if you can right away!  Call the Citrical Alopecia website and see if they can recommend a derm for your case.

NO good Doctor would tell you that!  I feel sad when I read something like that!  ANY Doctor who tells you that is an arrogant (you know what!)!  Doctors are always supposed to help and if they can't they MUST refer it's in the ethics code ffs!!   My Long Time Dermatologist tried to treat me the 1st seven months of diagnosis and after months of head injections and no change he gave me 2 names of hair derms. I still go to him for Cancer screenings because I like him. 

But if you are experiencing face papules, you poor thing, there's absolutely no reason for a dermatologist to tell you, "too bad" "deal" "nothing to do about it!"  There must be something!  I just saw that you got a lot of responses, so perhaps the laser therapy.  I've used Alphy Hydroxy in the past on my face and it was good.  What about a loofah? Is that a really stupid suggestion?  I used this homeopathic stuff for bad acne many years ago and it cleared my face very nicely. Also, Retin A cream? the generic version is called Tretinoin.  I've been using it for years! keeps my youthful glow!  LOL  I'm big on all natural no chemicals for most of the things I eat and use, but the Treitnoin is the one thing I turn a blind eye on. I use at night in combo with my natural face regimen. 

take care.

Permalink Reply by AnnieMay on May 28, 2017 at 3:07pm

I am so appreciative of all I learn from all of you on this site. I don't really have the facial papules/bumps but the texture of my skin seems very different now? Along my temples it looks very mottled and scarred? And I have some white spots? My dr said that it is common with FAA. Ugh

I'm 60 and I had been thinking of getting some IPL photo facial treatments done? My dr said that my FAA is currently stable but now I'm worried that IPL could activate things?? I'm not sure I want to take that chance. Have any of you done any cosmetic treatments or procedures and what are your thoughts?

Just hate that we all are dealing with this. . .

 

Permalink Reply by Camille on June 2, 2017 at 10:47pm

Dear SallyWess,
Thanks for sharing your beautiful picture. I feel braver because of it! Your eyebrows look great! Have you had something done to them?
My question is about the papules. I wonder if this is what I have around my jaw line. The derm says they are sebaceous cysts but I've never had them before. Acne meds haven't helped. I also have Lichen Planus in my mouth, no hair on legs or arms. Does anyone have burning mouth? Mine started with the hair loss a few years ago and the Dr has no answers.
This is a weird disease!

Permalink Reply by DeniseC on June 3, 2017 at 2:23am

Hi

For me, I think everything started with oral lichen planus. My GP thought it was shingles in my mouth at first - VERY painful and sore, with blister-type spots popping up all over my mouth and throat and the tell-tale white striata. Once I got to see a dermatologist, however, he immediately diagnosed LP. No treatment, just manage the symptoms. Great.

I then got severe gut problems - so much so that I ended up in hospital nil by mouth for five days as they were convinced they were going to find something they needed to operate on. All the tests under the sun - nothing. I was convinced at the time that it was linked to the LP, but they said there was no link. 15 years on, it is acknowledged that LP can be in your gut, so I was right.

I also had at the same time a severe rash on my forehead, which they thought was linked to lupus. Wrong again.

All of that gradually faded, although I still get LP on occasion on my shins (I have it now). And then about five/six years ago I noticed my eyebrows were falling out - GP told me it was my age. Thanks. And then the hair, the FFA.

I am absolutely convinced all of these things are linked and symptoms of one underlying issue - a problem with the immune system. I think treating everything in silos, which is what seems to happen generally, misses the fundamental problem. 

One day, I am sure, someone, somewhere will come up with something that gets to the bottom of it all, but it very much seems to me that unless they start looking much more holistically rather than focusing on the one thing, in this case FFA, we will always have the problem of treating the symptoms rather than the cause.

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page