Replies to This Discussion

Permalink Reply by Katy M. on March 13, 2016 at 4:17pm

I have been on plaquenil and Erythromycin (because Doxy upset my stomach) for the past 2 years with monthly steroid injections in my scalp.  my LPP is nearly burned out.  very little active areas and I still have hair.  I have a new short cut that is styled forward and it pretty much camouflages my receded hairline from ear to ear.   Working very closely with dermatologist who has experience treating FFA (mine is LPP), has really helped me.  I am optimistic!  I had a brow transplant 3 yrs ago and those are still growing strong.  There are a lot of baseline tests that have to be performed to make sure you are a good candidate for plaquenil. I have had no negative side effects.  I was hell bent on fighting this.  Good luck!  My dermatologist says there is more clinical success with Plaquenil and either doxy or erythromycin than there is with Actos or cellcept.  

Permalink Reply by Lo on March 13, 2016 at 4:35pm

My derm has told me that laser is not currently s treatment for scarring alopecia. The others you have listed are certainly all part of the tiered approach. Personally, I'm on several of them (finasteride, Celcept, and actos). I have a friend who told me that she spent a ton of money on laser treatment only to end up in debt. She felt like the doc took advantage of her situation (very upset and vulnerable)... And charged her with every singe treatment and it made no difference in the rate of loss. Yes, the meds come with their own set of risks... That's when we all make our own personal choices on what we are willing to do to possibly help our hair loss. Truth me told, I have not seen a huge whirlwind difference since on these drugs, but... Who is to say what loss I would have experienced by not taking them. That's the dilemma I face. Frustrating for sure.

Permalink Reply by BBQueen on March 14, 2016 at 1:18pm

Lo-how long have you had this?

Permalink Reply by Lo on March 22, 2016 at 4:21pm

I have been losing hair for 5 years... was diagnosed with alopecia areata in 2011.  After years of losing hair at hairline - and it not coming back (and clearly seeing the "white" band of skin)... My derm recommended we biopsy for scarring alopecia - officially diagnosed in January, 2015... have been taking meds ever since.

Permalink Reply by BBQueen on March 14, 2016 at 12:18pm

My Dr. Said I can take Finasteride and Plaquniel together. So, along with the shots that's what Im taking. Its only been a couple of weeks. The lady that is making me a hair piece said the laser combs only work for people that still have follicales. She did a scan thing across my head and I have very few follicoles. My hair piece does not look natural but I have to wear it while the rest of my hair is thick and beautiful. This is such a nightmare. Why do so few of us have this? Its so rare I cant believe I have it. My only hope is for a miracle.

Permalink Reply by Lo on March 14, 2016 at 12:34pm

BBQueen - how long have you had this? 

Permalink Reply by BBQueen on March 14, 2016 at 1:17pm

About 4 years. I never thought it would get this bad. Ive lost about 3 inches all around my face. I was in denial and thought it would stop and come back. But it didnt.... its been really bad the last 6 months. Im so mad about it. It has turned my world upside down and sounds like I will never get my hair back. Im just sick!!!

Permalink Reply by Lo on March 14, 2016 at 1:45pm

Believe me - I (and every one on this forum) understand that frustration whole-heartedly.  It plays with our minds/emotions/self esteem.  My sides (above my ears) are back 2 inches, and my temples as well... I thought it had stopped, but then about a year ago I started to see these red dots and pink scalp along front hair line... at which point my diagnosis changed from alopecia areata (original mis-diagnosis) to FFA.  I started treatment a year ago - but it has not seemed to stop the frontal hair loss.  I always think to myself if the front hairline recedes back as much as the sides (temples and above year), I will easily have a 2 plus inch "band" around my whole face.  That, sadly, seems to be what happens with many.  That said, I read posts from people like Katy M (above), who have had great success with medicine stopping/slowing the progress.  If only there could be some consistency/certainty. I think that would alleviate so much of our worry.  On that note, do you just push your hair forward, or wear bangs to try to disguise the loss?

Permalink Reply by BBQueen on March 14, 2016 at 2:09pm

I have (had) long curly hair that up until this year covered it with bangs. Now its getting so thin on top I can not longer hide it. Even with a gallon of hair filler. I have a litte hair piece that has clips that goes under my real bangs to make them look thicker and hide the hairline. It doent look great but I wear it. I have two other hair pieces on order. The special order one takes three months to get and is $500. I have to charge it but I dont care because I have to have something to wear that will hopefully look natural. If that doesnt work and the meds dont work in 6 months i guess I'll shave my head and try to be confident in wigs. I look like a freak and I was once pretty.... this is very hard.

Permalink Reply by BBQueen on March 22, 2016 at 10:17pm

Thank you! I guess Im lucking to say this is by far the hardest thing Ive had to go through that doesnt have a solution. I have two new hair toppers that look okay but are not perfect and Im stressing about going to work. I really have to think owell if they know I wear a hair piece. I feel so uncomfortable wearing hats at my office job. My hope is to get a transplant one day even if its years from now. Id really like to post pictures of myself before and after and of my hair pieces but Im afraid of someone googling me and it showing up. Another thing I was thinking was I used to get coldsores All the time and since this I dont get them anymore. That makes me think its a hormon change. I also once played with a weggy board(dont know how to spell it) and Im wondering if it cursed me. That sounds nuts but I think of every possible thing that could have caused this. But Im a worrier and Im sure that did it.I also never had children so I have nothing to do but think of myself.I need to go hang out in a hospital to help put thing in prospective. Joel Olsteen says "God will give me beauty for ashes" but Ive yet to see the beauty in this. I hope you all dont think Im crazy for my rant, but owell cuz I guess "we are all mad". :)