Replies to This Discussion

Permalink Reply by Maz on August 28, 2017 at 10:33am

Has anyone ever had FFA totally go away - for years - without a cocktail of drugs. You won't always want to take those drugs. One day you will decide your health is more important. If there was no chance of it coming back such a procedure would be quite interesting if you were prepared to take all the risks. Personally, I think it could all turn pear-shaped but if you were already keen on a facelift maybe this sort of thing could be incorporated into the deal. I'd be interested in hearing if this has been done already or if your dermatologist is just trying to make you a guinea pig. Remember, specialists tend to see patients as their condition, not as people. I'd be wary of a doctor who is keen on unnecessary surgery. Be careful.

Permalink Reply by vinny on September 17, 2017 at 12:11pm

Whats ffa

Permalink Reply by BubbaLu on May 13, 2018 at 10:44pm

Why are you on this link?   It is only for FFA. 

Permalink Reply by diana on August 28, 2017 at 2:27pm

i personally would not have the transplant.  the cost is huge and if it spreads to those transplanted areas then more money down the tube..  unless it has completely stopped then i would go for it.  but how can we be so sure. today its fine, tomorrow it's back.  if you have the money to splurge on it i guess go for it.  good luck with your decision.

Permalink Reply by Sequingirl on May 10, 2018 at 3:38pm

Mine was diagnosed 7 years ago was quiet last three years and is active again.

Permalink Reply by BubbaLu on May 13, 2018 at 10:45pm

So Sorry Sequingirl

Permalink Reply by jmh485 on August 29, 2017 at 8:51pm

Thanks Maz and Diana for your advice.

I feel so stuck, not able to feel comfortable with my appearance. Almost a bit paralysed as to what to do. I am currently doing a lot of job interviews and it's crippling my confidence.

I see my dermatologist tomorrow so I am most certainly armed with several questions about the drugs I'm on and the legitimacy around cosmetic procedures actually working for someone with FFA given the traits of the condition.

Permalink Reply by Joy on August 31, 2017 at 5:47pm

I had a facelift - upper and lower eyes, jowl and neck lift ten years ago - my FFA and LPP did not start until 4 years ago - I have recently read a post from Donovan hair clinic from 2012 regarding people that had had plastic surgery of some type getting FFA - I had not read this information before - I had extreme numerous stressful things that happened 4 years ago - I lost an inch around my face and on the left behind my ear - everything that I had read until yesterday was always about not advising us to have surgery if we had had FFA or LPP including what had been posted from CARF - so this new info was a surprise - I cannot imagine that my surgery caused it but it may have traumatized the facial nerves as another Doctor on the other sight that I am on thinks that head trauma can be a precursor - then add huge stress which someone has posted regarding compromising the carotid sheath of nerves that lead to your scalp and what else - maybe out digestive system - this whole thing is bizarre - mine is pretty quiet and still working at 69 I would love to touch up my jowl line but - I am really afraid of what might happen - if you do I would certainly make sure that whoever you see has had other FFA or LPP patients

Permalink Reply by jmh485 on September 2, 2017 at 11:59pm

Thanks for sharing Joy. I actually saw my dermatologist this week and she was going to a national convention (Australia) for cosmetic dermatologists and she mentioned that the leading specialist in hair would be at this convention. On my behalf, she's going to ask about hair transplant, hairline lowering and what effect FFA patients incur if they come off medication like minoxidil and aldactone. Removal of these drugs cause shedding in androgen alopecia patients but my doctor thought it should be a different scenario for FFA. If she heard anything groundbreaking, she would call me Monday. Here's hoping! I'm 32 and I really don't want this to be it for the rest of my life. I haven't had surgeries or any trauma to my head like you mentioned. What I do have is existing auto-immune disease and a stressful period of time leading up to FFA first appearing -- all very common theme among many FFA stories I've read. Additionally, I used Efudix on my face 2-3 years ago for pre-squamous cell cancer spots.

Permalink Reply by Plf on May 10, 2018 at 10:58pm

Hi jmh 485, I was wondering if you are still on Minoxidil and aldactone, have you had any success with hair growth and stopping FFA.  My dermatologist has prescribed me minoxiMin 0.25 daily, aldactone 50 mg daily and dutasteride 0.5mg daily, did you have any side effects from these meds, thanks for you input

Permalink Reply by jmh485 on May 13, 2018 at 6:12am

Hi Plf

I am off all medication now having been on Minoxidil and Aldactone for over a year. 

I was on a combination of 1mg and 100mg respectively for about a year. Then in October last year, I started to experience dramatic overall hair loss which was later confirmed to be chronic telogen effluvium. This undid all the good hair growth and thickness that had developed. A big disappointment and forced me to get a hairpiece to hide the FFA.

I ended up at a standoff with my dermatologist about using medication given my circumstances. Why take these drugs if my hair is going to fall out anyway? Also, they were still pushing me to pursue the hairline lowering procedure even though my latest punch biopsy in the top of my head showed inflammation. Just too many red flags for me. I feel my doctor is only seeing the condition and not the patient.

Additionally, I flagged issues that had arisen over the year while on these medications which were dismissed.

Aldactone: I have gained weight and its weight that won't shift easily because it's hormone driven. I'm only 5"0.5 and it has spread throughout all the using "female areas" - upper arms, lower abdomen, butt and thighs - all have changed shape. Its hard to describe but my body doesn't feel like mine. I've also had fat deposits randomly appear outside the unusual places like my wrist in my body and it was enough of a concern for my physician to run scans. A quick search shows that aldactone is renowned for this but my doctor said nothing. I am in my early 30s and my menstrual cycle became unpredictable. My cholesterol has spiked and I have always had a fantastic history.

At my last appointment, my dermatologist lowered the prescription to 0.1mg minoxidil and 25mg aldactone as the latest study conducted in Australia showed relative results on lower doses. Again, all observed in the treated of female pattern balding, not FFA. This is really important to note.

Perhaps your lower doses will see minimal side effects and I could be just unlucky that I had such a significant impact but my research and other medical professionals that I have spoken to about aldactone make me think that this is not a good drug to be on particularly if you're using for off-label reasons. One doctor said to me (she herself had used it for other medical reasons), "It is the worst! No, don't take that drug".

In conclusion, yes it worked by growing the hair in length and body but I got fat and it impacted my health, and in my case, I lost my hair anyway because my body hates me :) Ask your Doctor lots of questions and do your own research objectively - everybody's body, and therefore their opinion, is going to be different.

Hope this helps.

Permalink Reply by MnM on May 13, 2018 at 10:07pm

Jmh485, I’m 35, diagnosed at 29. I agree about the Aldactone, I gained weight and decided to stop taking it after 9 months. My issue now is that my forehead is starting to look “weird”. The veins in my forehead are getting depressed, which I just read is an ffa symptom. So tough knowing how much time I have ahead of me and worrying what I will look like in 30 years. 

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