Replies to This Discussion

Permalink Reply by Airam-FFA on April 18, 2017 at 12:26pm

I had never heard of it but have just looked it up - side effects rather worrying :/

Permalink Reply by DragonandFox on April 19, 2017 at 5:09pm

Unfortunately all medications report side effects.  I understand the worry but, many people with  diseases other than FFA claim they've had good results with this treatment.

My Dr wrote that she tried it with some patients who suffered extreme itching but it didn't work for them so they went off it.

I'm thinking of trying it.

Permalink Reply by Airam-FFA on April 20, 2017 at 5:53am

Let me know how you get on. Different things work for different people. xOx

Permalink Reply by Jack_86 on February 4, 2018 at 11:40am

Hi Dragon&Fox,

did you try Low Dose Naltrexone? I've read an article about LDN (Novel Treatment using Low-Dose-Naltrexone for Lichen Planopilaris

Strazzulla LC, et al. J Drugs Dermatol. 2017.)

It seems to reduce symptoms.

Did your Dr try it with patients who suffered from FFA?

Permalink Reply by DragonandFox on February 5, 2018 at 4:20pm

Hi Jack_86.  I have not tried the LDN. I asked My Dr. but I can't recall her answer, only that it wasn't going to work..(Dr Bordone is conducting major research right now and says they're coming up with "something").

Permalink Reply by MnM on February 4, 2018 at 3:51pm

Yes, I took LDN for 6 months without an issue.  My dermatologist allowed me to try it, she said at that low of a dose it's a pretty benign drug, so there was no harm.  I had to have a compounding pharmacist fill it as it's not normally prescribed at that low of a dose.  I can't say that it helped or not, but it didn't make anything worse.  Sleep issues are the most well known side affect at this low of a dose.  I did have vivid dreams while I was on it, but nothing crazy.  

Permalink Reply by Jack_86 on February 4, 2018 at 6:57pm

Thank you.

Permalink Reply by akb on February 7, 2018 at 12:37pm

I'm just about to start LDN, prescribed by my integrative medicine doctor . . . I have avoided all the other drugs other than topical steroids and am hoping that this might work in conjunction with my AIP diet to help a little! I'll report back.