Replies to This Discussion

Permalink Reply by Rose Marie' on October 17, 2013 at 5:35pm

Hi

I think it would be helpful for you to talk to your health specialist. I'm not sure of the outcomes with lichen planopilaris and scarring alopecia.

Steroid shots and oral steroids do work to bring hair back....but you can not take and use the shots long term...unless your hair goes into a remission, when you stop using steroids your hair will fall out once again (this is the case with alopecia areata).

Rosy

• ▶ Reply

Permalink Reply by carol on October 18, 2013 at 12:47am

Thank you for your input Iam thinking that the shots may not be worth the possible side effects. I know I don't want to do them long term and it is getting worse anyway.

• ▶ Reply

Permalink Reply by purplemainst on October 18, 2013 at 6:41am

Hi,

A bit further down my road with Alopecia and yesterday had a scalp biopsy done to test for Lichen planopilaris. Now, the wait for confirmation. If yes, I will do any treatment they can think of to slow progression, regrow any possible hair. Praying stabilizing will happen.

• ▶ Reply

Permalink Reply by carol on October 18, 2013 at 10:45am

I hope that you don't have this kind but if you do the dr. might be able to control it before it leads to scarring. Good luck and let me know.

• ▶ Reply

Permalink Reply by purplemainst on October 18, 2013 at 5:25pm

Hi,

I already have some scarring.  I didh't have itching or burning, just slowly receding hairline with hair loss increasing rapidly over the last 6 months or so.  So, I am pretty sure this is my situation.  I have the signs of Frontal Fibroising Alopecia.   But she said she still could offer me treatments, so address the hair follicles that are not yet scarred.  Want to start treatments ASAP as I am worrying like crazy as the days go by

• ▶ Reply

Permalink Reply by carol on October 18, 2013 at 6:08pm

Did she have the results of the biopsy?  Sometimes my scalp is red and itches and other times not so bad it goes back in forth.  I also have the FFA with big patches on my head and smaller ones all over.  Trying to be positive  but it really doesn't look good.  However this works out I know that God will give me the strength to deal with it. I hope that you can start your treatments soon.  Try not to stress too much.  I know that is easier said than done but it wont help the situation. Hope everything will go well for you.  Stay in touch.

• ▶ Reply

Permalink Reply by Debs on October 20, 2013 at 2:36pm

I am part of a group of 101 ladies on this site in a group called 'frontal fibrosing alopecia' if you are not a part of our group then please do read our posts and join in if you would like.  We are all in different countires; USA, UK, Germany, Portugal, Canada and Iceland, we discuss our treatments and the drug regime is :

hydroxycholorquine sulphate - tablet

doxycycline - antibiotic tablet

dermovate - steroid lotion

steriod injections into scalp

minoxidil (rogaine/regaine)

Our derms are using combinations of these treatments but the meds that most of us are using are hydroxychlorquine sulphate to begin with to try and stop the inflammation and get the FFA to stop.  This is a very difficult condition to treat and unfortunately there is no one drug that can be prescribed to stop the FFA it is very much a case of using a combination of things to see what works for an individual.  Please do be kind to yourself this is a very stressful condition.  Wishing you the very best with your treatment .

 

a

• ▶ Reply

Permalink Reply by carol on October 20, 2013 at 5:51pm

Thank you for responding to me would love to be part of your group.  I am on the same treatment except for the antibiotics.  It really helps to communicate with others and not feel so alone with all this.

• ▶ Reply

Permalink Reply by Brooke on October 31, 2013 at 10:04pm

Hi: I'm so glad this group exists.  I've been reading your comments for a couuple of months and have found them really helpful. I'm past the panic phase and just trying to deal with it one day at a time.  I was diagnosed with FFA in February, no idea what caused it but my iron was very low.  I'm seeing a specialist in Portland, Oregon and she has me on all of the above mentioned meds except rogaine.  She said it wouldn't help FFA, so I'm curious if it is working for anyone.  I know it's hard to tell what works when there are so many meds.  My hairline is receding and I'm getting little bald spots; my head itches and is still red in places.  I'm kind of rambling now so I'll sign off but I thank you all for the ideas and support you offer.  I haven't quite figured out how to post a picture but I will.

• ▶ Reply

Permalink Reply by Annie on November 1, 2013 at 1:49pm

Hi Brooke,  Sorry to hear that you have been diagnosed with FFA.  I was diagnosed with FFA in March, 2013.  I'm currently using a topical steroid, plaquenil, and men's 5% foam Rogaine.  The first doctor I saw said Rogaine wouldn't help, but the second doctor said he thought I should give a try.  It's true that you can't regrow hair where the follicles are scarred over, but I have been able to regrow some of the hair where the FFA hasn't been as aggressive.  I am a member a Frontal Fibrosing Alopecia group on this site with 107 members to date.   You will find postings from members with a lot of information regarding FFA.  Good luck to you in whatever treatment options you choose.

Permalink Reply by Sheryl on February 3, 2015 at 10:28pm

Hi Brooke,

I am in the Portland, OR area also.  My Dr. is Susan Koch who says she has trained in CA with one of the experts of scarring alopecia.  After reading all of the comments here and and other sites it seems like no matter what treatment anyone is on, the final result is continued hair loss.  I have been on the steroid foam & lotion for 2 years.  I have been faithful with the twice a day for 6 months, then tried no treatment for 6 months.  There was no difference, as there were times of no symptons or lots of what I like to call "activitity" with tingling, itiching, redness.  It did not seem to matter if I was on treatment or off sometimes all was well or not so much.  Doctors all seem to agree that they do not have a cure yet.  I have just learned about "Caboki" which is a powderey fiber in hair color shades that you sprinkle on the thin or bald spots, it has been a miracle for me.  Wigs just seem to have too much hair, compared to my before SA hair, so this has allowed me to fill in the bad spots.  Who is your  doctor?  I would love to start a support group in our area, are you interested?  Thanks,

Sheryl