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Comment by April on October 25, 2013 at 11:51am

Hey Everyone, I think I need some advice.  I am worried about these injections.  They seem to have helped others on here, but others not so much.  I had one round of the injections about 2 1/2 months ago.  These shots caused a dent in my forehead which I believe is starting to fill in a bit thankfully. I also believe they caused increased shedding of hair.  I refused another round of shots last time I saw my derm because of this.  He said these shots do not cause hair loss and that I should continue with the shots because it is the only thing that will really help.  I am not going to do oral meds, at least for the time being.  Currently I am receiving UV excimer laser therapy which has reduced the red, inflamed appearance of my scalp greatly.  I believe it may be slowing down but not stopping my hair loss.  I am also following a Paleo diet  and using a shampoo with tea tree and peppermint oil as well taking turmeric. I may try the shampoo that PJ had success with.  I'm not sure what else I can try medically other than the shots, since I am not doing oral meds.  I have an appt. for a second opinion with another doctor and I am seeing a different provider at my derms office on Tuesday.  Not sure if I should continue with the shots or not??

Comment by PJ - MN, USA on October 25, 2013 at 8:06am

I forgot to mention with the shampoos, you need to leave them on your head for 3-5 minutes. Also, do not rub the conditioner into your scalp. Just in case it has something to do with my hair, I have been taking a multi vitamin, fish oil, vitamin D, blood pressure meds and potassium. I have been taking these for a long time and none of which were prescribed because of my hairloss.

Comment by Annie on October 23, 2013 at 12:58pm

I agree with PJ's doctor regarding  hair follicles that haven't been severely damaged growing new hair.  I've been able to regrow some hair  with the use of Rogaine.  I've had the best results on the right side side of my face where the ffa didn't start as early.

I'm curious how many women on this site have had steroid injections, and if they think it has helped.  I was diagnosed in March, 2013, have seen 3 doctors, and not one ever mentioned the option of steroid injections.

Comment by PJ - MN, USA on October 22, 2013 at 11:47pm

April - I do wash my hair everyday alternating the shampoos. I was told from the beginning that it is important to wash your hair everyday to keep follicles clear of any residue, etc.  Once in awhile I will take a week off from these shampoos and use my "normal" shampoo which is Matrix Biolage Delicate Care. My Dr took me off of DHS Zinc because she thought I might be having a reaction (itchiness/redness) to it after using it for a few months. The ketoconizol was just something else to try, not sure if it has made any difference or not. I did develop some dents from the injections. One that took 9-10 months to go away. I did not notice the doxycycline helping with my hairloss or scalp. It did help with my dry eyes and face. She prefers to not have  you take any oral meds if possible.  Hope someone else has this news to share soon!

Comment by Chrisy, MA USA on October 22, 2013 at 10:42pm

Great news PJ! I'm really happy for you. That gives hope to all of us.

Comment by April on October 22, 2013 at 9:25pm

Pj, thanks so much! Questions: do you wash your hair everyday alternating shampoos? Why did you switch from the zinc to the ketoconizol? Also, did you develop any dents from the injections? Do you feel the doxycycline was helpful? Thanks again!

Comment by Sam on October 22, 2013 at 9:22pm

Thanks so much for sharing PJ! Great news and I truly believe you will not be the last one with a wonderful new prognosis. Stay positive everyone :)

Comment by PJ - MN, USA on October 22, 2013 at 8:38pm

I first noticed hair loss around 2008. I was officially diagnosed Aug 2012 with FFA & LPP. My treatment was very conservative.  I was told in the beginning that once hair was gone it would not grow back. Later I was told I was in early stages/mild case of FFA and the hair follicles weren't completely destroyed so hair might grow back. I started out getting the steroid injections, rotating between Head & Shoulders Classic shampoo and DHS Zinc shampoo, using Free & Clear Conditioner and Free & Clear Hairspray. Now I use Ketaconizole shampoo instead of DHS Zinc, otherwise hair regiment is the same.  I think I did a total of 4 rounds of steroid injections. I was on Doxycline for 4 months (Feb-June 2013) I did not change anything with food/drink. I just have been trying to eat healthier in general (which I'm not good at). I color my hair every 5-6 weeks. Almost forgot I did use Clobetasol foam once in awhile - not on a regular basis. I did use it day before and day after hair coloring.   I do not have any eyebrow hair regrowth. I'm using Elidel cream on the eyebrows. I am to continue with what I am doing and go back to Derm Dr in 3-4 months. I'm also seeing her to deal with my rosacea. I do believe the steroid injections are a very important part of the treatment and getting treatment started right away. I know I am lucky because I have a milder case than what it sounds like a lot of you have. I didn't get a chance to ask her if I will have to continue treating my hair/scalp the same way forever or if I can use other hair products.  I think I will be afraid to stray from this treatment for fear my hair will start falling out again. One other thing, I tried to not let FFA consume my life. Sure I had my bad moments, but I really tried to keep it in perspective and carry on in life. Everyone around me was very supportive and did not make a big deal out of it either.  I am afraid though when I go back in 3-4 months the Dr might look at my scalp and decide it's still active. For now, I'm not going to worry about it.

So everyone - just be good to yourself!

Comment by Brenda, IL US on October 22, 2013 at 5:59pm

So happy for you PJ!  Very exciting to hear that your hair is coming back!  Please let us know if you took anything besides steroid shots.

Comment by Jen on October 22, 2013 at 5:02pm

PJ, this is the best news ever. Congratulations. Break out the best champagne.  My derm said that FFA is irreversible so this is pleasantly surprising.  So what did you eat and drink and what other treatments turned your luck around?

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