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Comment by Sher on December 9, 2020 at 1:49pm

I was diagnosed with FFA on November 5. I’m still trying to get my head around S. If I think about it too much it is so upsetting. My doctor put me on Betamethanol to use on hairline and at temples. I’m using an ointment he prescribed on my eyebrows. He also said for more aggressive treatment I could take doxycycline which is an anabiotic. All of these treatments or two times a day. I filled a prescription for doxycycline but I’m afraid to use it. I worry about long-term effects from anabiotic‘s and ruining the good bacteria in my gut, even with taking probiotics. I have other autoimmune disorders and I worry about that really wreaking havoc overall. Does anyone have experience with this anabiotic? I understand the antibiotic is typically used long-term for acne. 

Comment by LittleRhody on September 16, 2013 at 8:43am

Thanks Barbara and Ellyn. Joining Alopecia World has really helped. Talking with women in the same circumstance has been enlightening. Maybe I will try the mens Rogaine. I have tried the womens rogaine but I stopped after 5 months because I started using Clobetasol. I did not know you could use both. Thanks again.

Comment by Ellyn on September 14, 2013 at 6:05pm

Congrats LittleRhody - acceptance is a big step and even bigger step telling friends and family what is happening - they will be more supportive than you could ever have imagined
(and will probably tell you their horror stories that they have kept hidden for years!)All the best.

Comment by Barbara on September 14, 2013 at 8:05am

I just had to stop DPCP due to having a systemic reaction (itching and rash all over). I do have the start of some regrowth on my head. My doctor told me to use Clobetasol at night followed right after by men's Rogaine. Thought you might want to know that you could try this combination. Hope this helps!

Comment by LittleRhody on September 13, 2013 at 9:52pm

Thanks everyone for all of your feedback. It has been very helpful. I am still up in the air. I'm thinking I just want to not try anything else at this point. It seems like nothing is going to work. I guess I just have to hold on and believe in my heart that I can fully accept myself for what and who I am as a person. At this point I am doing a pretty good job of masking my hair loss. I don't know how much longer I will be able to do this. It seems like the hair just keeps coming out. I guess if I just tell my friends and family what I am dealing with then there will be lest judgement. Signed still hopeful.

Comment by Starr on September 13, 2013 at 11:40am

yes.

Comment by sallylwess on September 12, 2013 at 10:42pm

What is FFA? Is that Frontal Fibrosing Alopecia?

Comment by fijifrangipani on September 12, 2013 at 8:23pm

I have lived with alopecia for almost 35 years now, from small patches to being totally bald. Having gone through all the treatments, Regaine, minocidil, steroid injections, all when I mostly had patches I still ended up completely bald. Knowing what I know now, if I could do it all over again I would not touch any of those drugs at all. They served no purpose in the end. My hair has grown back a few times, but not when I am on treatment of any sort, and it falls out again the same way. Fine hair growth does not guarantee it become real hair and grow back. I know it is hard as I was 13 when my hair started falling out, the worst time for a pubescent teen, and have struggled with how I look and my feelings of devastating loss.. but I made the call to be bald and am now happy in my own skin. I dont even think about it any more. I know not everyone may agree but now I would advocate against any treatment. If you are suffering from a diagnosed auto immune problem as well, then even more reason not to bombard your system with drugs. I know not everyone will agree, but having tried so many alternatives and spent so much money of specialists and treatments, I know really wish I had never gone near the drugs. I find meditation, yoga and massage a lot more healing.

Comment by Lauren A Engle on September 12, 2013 at 6:39pm

I have had allergies my whole life. I say that because when I was 3 months old I had excema and the Dr. told my mom that I would have asthma and many allergies throughout my life. Im Thirteeen now and he was right. I got AA when I was three and a half years old. We always thought there was a allergy connection because it came and went with the seasons. My mom never tried any AA treatments because I was already maxed on steroids for asthma I suppose. To get off them I did allergy shots. And my hair grew back..I know right! Gymnastics season started up and we couldnt do the shots. Hair fell out..Season over and time to train again resumed shots..hair came in. What do you all think? Im quite sick of Dermatologist etc. telling me coincidence when this happened 3 times!
Im thirteen and I want some hair even for a little while would be cool. What does it matter to them anyways.

Comment by Dorothy on September 12, 2013 at 5:35pm

Honestly, in the beginning several things were tried and nothing worked for me, so you have to decide what if anything is or will work for you. The only thing that ever produced results for me was mega doses of thyroid meds and I was living in Holland at the time and I can not get a USA doctor to give me high enough doses to replicate, so I am stuck. I do not subscribe to one fix for all.

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