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Comment by Christi Q. on August 24, 2017 at 1:23pm

The two things they "suspect" are causing FFA I've been doing for many, many years.  Used sunscreen for 30+ years EVERY day on my face and in my cosmetics.......AND.......was on birth control pill for 18 years.  Ugh......

Comment by GEMINIJEANNE on August 24, 2017 at 1:03pm

Hi folks - I am reading all the comments on this site - such a boost to know other people suffering like me and to read about their struggles too. I have suffered from ffa for going on 5 years now - have tried everything - been to 3 specialists and now going to a fourth. None of them give me any good news really . I refuse to give up even though I now have to wear a frontal hairpiece and did get my eyebrows microbladed - best move ! I keep in touch with all the latest treatment and use Rogaine and clobetasol regularly . I also take hair , skin and nail supplements and vitamin D twice a day. So far hair is still shedding but not as bad so I'm keeping up the routine. Take care everyone and lets pray they find an answer to this horrible disease soon !

Comment by pauliegirl on August 24, 2017 at 12:12pm

I agree that a mild antidepressant could be beneficial if you are having stress that is above-average, which I would pretty much think is most of us with FFA! Starting low dose is always good. I started Zoloft within weeks of diagnosis. Unfortunately it didn't play well with my migraine rescue medicine so I weaned off after we realized that. My PCP started me on Buspar and it got rid of the nasty anxiety:) I remain on it.
Kristen P, I wouldn't recommend being without sunscreen, but rather without CHEMICAL sunscreen! Zinc and /or titanium dioxide are very safe (when not combined with any of the nasty chemical ones). I have found that most doctors don't have a clue about this disease. I put much credibility in the Belgravia Hair Loss Institute and they have compelling evidence that sunscreen does seem to be a piece of the FFA puzzle. I also hold that we started seeing this disease shortly after chemical sunscreens became the norm. According to those who answered my question regarding regular use of something with sunscreen on their face, the response was overwhelming that the respondents used it for a prolonged period. I will go to autoimmune specialists in a month at John's Hopkins and am anxious to see what they have to say in all this!
Best to all of you and may it be a day where your mind and hearts are finding peace in this challenging thing we've been dealt!

Comment by Dee on August 24, 2017 at 11:36am

I have had several physicians suggest that "stress" makes the disease worse, therefore, I strongly suggest anything including an antidepressant to keep the stress level low.  

Comment by Christi Q. on August 24, 2017 at 11:33am

Thank you Airam for the update!!

Comment by Kristen P on August 24, 2017 at 10:21am

I know there is a lot of speculation about SPF, but my doctor (at Northwestern in Chicago, Illinois, USA) doesn't think it's valid. I'm a high risk for skin cancer (Irish, Swedish, and English descent and also had a very rare skin disease when I was younger) so there's no way I'm giving up sunscreen. Both of my parents had squamous cell spots removed. They both died from other forms of cancer, so cancer runs pretty strong in my genes.

I understand this is a disheartening, confidence-killing condition (I was diagnosed when I was 36, but started seeing recession and hair loss around 34) but I think it's irresponsible to suggest people stop using sunscreen. Please use sunscreen! Melanoma is on the rise and is a very deadly form of cancer! 

Comment by sammi on August 24, 2017 at 3:12am

Recently attended clinic with dr harries Manchester mentioned spf sun lotions on forehead to avoid. Anyone else been told or advised to avoid using?

Comment by Airam-FFA on August 23, 2017 at 11:27pm

Hi Christi Q

Update following my referral to Guy's:

We discussed the condition and choice of treatment - I am very reluctant to try anything that might have the potential to damage e.g. my liver, eye sight etc so initially I have been prescribed a shampoo - Etrivex (Clobetasol)which needs to be applied to the affected areas everyday for 15mins then washed off; I am then to apply Elocan lotion (Mometasone Furoate).

I haven't read the leaflets yet as I got back late from London and have woken in the early hours with this condition on my mind and my scalp feeling itchy.

The Specialist said that it wasn't known what actually causes the FFA but stress is a likely trigger; with possibly hormones from the contraceptive pill and HRT playing a part.

I am to use the above medication for two/three months. I was prescribed two months supply, but the hospital pharmacy's policy is to only give one month's supply. I have to see my own GP for the second month's repeat prescriptions (this seems a bit silly as it means a trip to my GP practice to ask for the repeat prescription, another visit to collect the prescription, another visit to a pharmacy to buy the medication with the pharmacist having to sort the medication - I can't help thinking that this is a lot of additional time / costs needlessly duplicate ...)

I should have asked at the time of my appointment: after the two/three months I am not sure if I get a follow up appointment at Guy's. (There is always too much to think about with this condition that I have forgotten to ask this :/ )

I will keep you posted as to how effective this treatment is.

oXo

Comment by Sad in chicago on August 23, 2017 at 7:18pm

Sad here.  Having a tough summer with tapes slipping on the front of pieces and trying to look "cool!"  Other than that, it is apparent, after visiting my hairdresser today for a shape and color of my real hair, that the area around one ear loss has increased on that side by about one inch.  There is no doubt that even tho the back of head and hair at nape strong, I will definitely need a full wig in the near future, maybe next year.  Bummer. 

Regarding eyebrows, mine are now tatooted and it is great!  Even on days where the pigment doesn't look as strong, just filling in lightly, but having a shape and "brow" to work with makes all the difference in the world.

This is tough....no easy answers.  

Comment by diana on August 23, 2017 at 6:24pm

hi halfbakedwho... haven't been back here for a while and just read your update. WOW you have growth on the affected areas after applying the minoxidil and cortisone. I am shocked as the docs say that the scalp is "scarred" and will never grow back. This actually makes me feel good...even though right now i don't think i have any new hairs coming in those areas, but then again i am not using anything on my scalp, which i think i have to reconsider. i was the same ... every minute it was on my mind. could not sleep, eat or think of anything else.. terrible then but better now. thanks for the good news. we'll see if i go ahead with those topicals.... i'm so afraid of the side affects.. but maybe worth it since i am making myself sick with worry anyway, what's worse!

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