Replies to This Discussion

Permalink Reply by Plf on April 12, 2020 at 2:47am

Hi Liz, don't know if I'm allowed to comment as not on the question you asked.. you are to be congratulated for not letting this thing dominate your life, I'm glad you have moved on ..I too have chosen not to medicate, what will be will be..but I do wonder why I still read these posts, am I secretly still hanging out for a miricle?  Stay safe all, xx

Permalink Reply by Elizabeth W on April 12, 2020 at 11:25pm

 Plaquenil, hydroxychloroquine was probably one of the medications my dermatologist listed for me to take and listed a long list of all their side effects.  The potential side effects seemed worse than my condition, so I have kept up with my original prescription of clobetasol.   I have enough hair and hide FFA with the bangs I've worn most of my life. I'm losing eyebrows and lashes, both hidden behind glasses and covered with makeup.

I have no symptoms of COVID-19.   

Permalink Reply by Susan on April 25, 2020 at 10:19pm

I was recently diagnosed with FFA., one week before “Stay At Home” orders went into effect. I was  giving a topical, Hydroxychloroquine,  given a 6 week follow-up appointment , and told to find a support group.

 I guess I don’t need to tell any of you how I was feeling and what I was going through and to make matters worse the six week follow up appointment of course was canceled . and I had a second opinion set up which was also canceled , so here I am homebound ,  not knowing anyone that’s been through this , not knowing anyone that knows anyone that’s been through this , and how they deal with this , and not being able to go out to  explore the options of hairpieces , wigs, other medications etc.

I just don’t know where to begin, what to try, and how to cope. I just recently signed up on this site. 

I also am one of the last hold outs for facebook and other social media apps , so not connected that way.

i am worried about being on Hydroxychloroquine, however if it has been known to help this condition I may feel better about it? 

I would appreciate any and all information, help, suggestions, ideas, feedback, sources, and experiences that anyone would share with me. 

Experiencing this traumatic disease at this time in our world has been challenging to say the least. 

Thanks for being here, Susan 

Permalink Reply by Taylor on August 4, 2020 at 10:39am

Hi Susan.  I completely understand and feel your pain.  I, too, was diagnosed one week before quarantine and dealing with the stress of FFA and Covid simultaneously has probably made more hair fall out.  Every now and then I can put one or the other behind me for a bit and that helps for a short while.  Either one of these things would have been hard to deal with by itself.  Hang in there and let's persevere the best we can.

Permalink Reply by KarenGinny - Iowa, US on September 27, 2020 at 9:45pm

To everyone, I was diagnosed with FFA - Lichen planopilarus - LLP back at least 4-5 years ago. One of the things my doctor tried was the hydroxychloriquine and I was on it for only a short time and developed a rash of some kind, I can't really remember but it was the only new medicine I was on so my doctor took me off of it. I've had quite a bit of hair loss but it has been stable or at least not much change in the past few years. I've lost a lot of hair on my hairline and temples. I style my hair with bangs and wear headbands or a hat outside to hide it. I've now taken methotrexate for a few years and it seems to keep the redness and irritation to a minimum. I've pretty much gotten used to it but still hate having to check on how my hair looks all the time and wearing headbands gives me a headache if I have to wear it for too long, but most everyone sees me with it and don't usually ask why. Now with Covid, I'm not socializing and going out much so that's made things a little easier. if you can call it that!

Permalink Reply by Kojack on February 8, 2021 at 1:09pm

I was diagnosed around 2014-2015 and I also tried hydroxychloroquine and developed a rash the first week and had to discontinue. Hair continuing to recede and bangs too thin to cover baldness so having to resort to wigs now.  But they make some nice wigs these days. Most people don’t even know I am wearing a wig.  My main issue now is itchiness which clobetasol does help to relieve. 

Permalink Reply by BubbaLu on December 4, 2020 at 9:39am

Susan,

I remember when I got the diagnosis about 3 years ago and was devastated.  I had no idea this was a “thing”.  I searched on line for answers and the pictures I saw freaked me out!

I have been on Plaqinil since the diagnosis - I still have itchy bumps but for the most part I can live with it.  My eye brows and sideburns are mostly gone but my hairline has only receded about 1/2 inch.  I consider myself lucky.  

I have blood checked and eyes checked on a regular basis, so far no issues from the medication.  It is such a low dosage, 400 MG a day.  My only side effect is sometimes loose stools.  One side effect can be weight loss!   When Trump first announced hydroxychloroquine as a wonder drug there was a shortage and I had trouble getting my prescription filled.  It has since been proven not to help with COVID.  

HANG IN THERE!