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Comment by Minter on April 13, 2019 at 10:04am

Thank you so much Kandy,  I have a scar (from when I was a kid) that "used to be" right at my hairline so I can very easily see how far back my hair has receded, its about a 1.5 inches back now from an already high forehead and definitely thinner at the hairline.  I do get really sad sometimes about it, not so much about losing it, but more what I will lose after it is gone- things I really enjoy doing that I will feel uncomfortable or embarrassed about once the hair is gone & I'll either have to wear a wig or a shaved head.  

If I was a younger version of myself, maybe I would feel more confident and rock all sorts of different wigs and or be bald and proud- but now I am will just be a weird middle aged lady with no hair and a saggy neck, ugh.  Though I guess with the money I'd save from the hair salon I can get some botox treatments to firm everything up- yay so there is a plus haha.

Comment by Kandy15 on April 12, 2019 at 4:31pm

Minter, I am so sorry to hear that.  This is the most distressing condition.  I find myself thinking that if I wake up and my hair is mostly gone, then I would be forced to move forward towards getting bonded hair.  I keep trying so hard to keep what I have but there are days when I can't stand to look at myself in the mirror.  

I hate this for all of us who are effected with this crappy crap.  I am so very hopeful for a miracle cure or something that will just stop the recession in it's tracks.  It's just the "not knowing" what our future holds that is so difficult and won't let us live a normal life.  

Hugs to you Minter.

Comment by Minter on April 12, 2019 at 7:45am

I've been finding myself pulling my hair back and envisioning myself with a shaved head lately- as I've noticed that after my last haircut my hairline has receded even more and it is also starting to just feel a lot thinner.  Starting to realize that the inevitable is starting to happen.

Maybe I'll look like the Alpha character on the Walking Dead!

Comment by Kandy15 on April 4, 2019 at 10:43am

Toby,

Thanks for the vital information about the treatment plan that your dermatologist has been doing for you.  St. Augustine is 6 hours away from me so I wouldn't be able to make that trip as often as would be necessary.  My dermatologist in my small town is a PA but the main office is in another town about 45 minutes away. That's where she recommended I go for the PRP injections.  I think I will go back to see her and ask about the kenalog injections. I will do some research on that as I have never heard about that before.  I also have an appointment for a complete blood count panel with my regular doctor on April 11.  I am going to have them check all of my vitamin levels to see what I need as far as supplements go.

It's so crazy that so many women have been diagnosed with this stupid condition.  I had never heard about it until I was given the bad news 3 years ago.  Even then, I didn't understand what it was and how horribly it would impact my life.  It wasn't until I started googling it that I realized just what the effects could be and I cried and cried.  Still cry on my bad days but I'm trying to deal with it and go about each day like normal - whatever that is now. 

I appreciate this forum and all of the wonderful women who understand and the outpouring of support.  I'm not on Facebook so I check in here pretty often. 

Comment by Halfbakedwho on April 4, 2019 at 9:21am

wow one person a day with FFA - and the FB group has new people every day freshly diagnosed. 

Today is one of those days I'm staring at my neck (which is actually now my under-chin-neck, as in it's becoming one entire piece unto itself). So if you'd like to join me in obsessing about another part of your anatomy just for a change, then look up all the (very expensive and odd) options available to lift up said chin-neck, I invite you to come along for the ride. Now I have to stop touching my neck. Damn those mirrors in Sephora. But at least I smell lovely after passing the perfumes. 

Happy Thursday. 

Comment by Toby on April 4, 2019 at 9:15am

PBsunshine, if you do make an appt, please tell her Cheryl sent you (my real name).  Good luck!

Comment by Toby on April 4, 2019 at 9:01am

Certainly, her name is Dr Joanna McGetrick at Premier Dermatology of Florida.  The address is 1201 Arapaho Ave St Augustine, Fl. The office phone number is 904 460-2388. 

She he is very kind and gentle and really knows her stuff. She told me she is now seeing approx 1 person per day that has FFA. She is really at the front line with understanding what we know about this disease.  I highly recommend her.

If you like, let me know if you come up to St Augustine. I am about 30 minutes north. There are a lot of good restaurants and perhaps we could meet for lunch or dinner.

Best of luck.

Comment by PBsunshine1 on April 3, 2019 at 9:36pm

Toby I would like the name of your Dermatologist. I live in Jupiter FL which if a bit of a drive but it would be nice to consult with her. 

Comment by Toby on April 3, 2019 at 8:42pm

Kandy15, i live in Jacksonville, Florida. How happy are you with your dermatologist?  I have a dermatologist who has made a world of difference for me over the past year. My dermatologist is in St Augustine Florida. If interested, you would probably need to go to see her every 3-4 weeks. Not sure if that is doable for you. I get kenalog injections every 3-4 weeks and we are gradually increasing the timeframe in between. I am on fenestaride which she gives great credit to. At my worse about last summer, she put me on pregnisone for 20 days. That is when my condition turned around from out of control to manageable. I take 1000 mg of Vitamin b12 and 5000 mg of vitamin D which I was deficient in both. On of them, either low vitamin D or B12 is also instrumental in depression. I also take slow release iron with orange juice every 2-3 days. Since I started the iron, hair has regrown on my legs and now surprisingly I need to shave my legs sometimes. I hate to think where I would be now if I had not found my dermatologist. She has Meade a Hugh difference in my life. Please let me know if you would like her contact info. All the best.

Comment by Kandy15 on April 3, 2019 at 3:21pm

Louise,

Thank you for validating my feelings,  I know that so many of us feel the same way. Many days I feel as if there is a rock tied around my heart. The only way for me to really sleep is to take sleeping pills too. I use 1/2 of a Unisom and sometimes it helps, sometimes not. I went to see my dermatologist this morning - beautiful lady with beautiful hair - and she let me know again that there is no cure.  I realize that but I would like for the progression to stop where it is and go no further.  She continued me on Plaquenil. I've been taking it for just 3 months with no improvement.  I tried finasteride before and it made my scalp burn like crazy.  She told me to try again but only with a half of a dose to see if I can take it without side effects.  She also suggested PRP injection therapy.  I'm doing some research on that.  All I can see is that it may help with alopecia but not the scarring kind we have.  There are clinical studies going on to see if it could possibly help with LPP or FFA.  Plus it's crazy expensive.  I still have redness, scaling, hair loss at the forehead - very active disease.  I want it so badly to STOP!!

I live in northwest Florida - Destin/Ft. Walton Beach - and have had calls from family that say they are coming this summer regardless of how I feel.  The only one who has been compassionate has been my daughter.  She said she and her family did not want to cause me any more emotional stress with being around people, plus the going and doing and babysitting for my grandkids.  I still work so I try to style my hair with the least bit of scalp showing with the high forehead using bangs.  I always am very self conscious about others looking at my really bad hair.  Can't wait to retire and hide out all day in my house. 

CurlyK, I wish I was closer to Tampa/Orlando because I would come see you.

Hugs to all!     

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