Hi

I am new to the group but have been dealing with FFP/LPP for a few years now. I have been to 3 different doctors. I think they get fed up and pass me on. Anyway I have an appointment on Wednesday and I know she is going to suggest finasteride or cellcept again. In 2016, Finasteride was suggested but I was concerned about the breast cancer risk so did n't take it. I am already at high risk for breast cancer as my sister and my aunt (who passed away from it in her early 50s) had breast cancer. I was on plaquinil for 2 years, used clobetasol at the beginning but thought it made things worse. I had 2 rounds of steroidal injections last year. Tried tacrolimus ointment for a month but thought it made things worse. I am currently taking doxycycline for the past 5 months. Also use Rogaine. I have lost a lot of hair. I got a topper in August which I thought helped but which I don't think works anymore because of the recession and I thought it might be taking hair out at the clips on the top of my head. After reading some things here, I stopped using sunblock (which was in my daily moisturizer and foundation) after Christmas and am now using a natural moisturizer of shea butter, olive oil and coconut oil. I thought it might be doing some good and saw some regrowth but I think it is just wishful thinking. My question is does anything work? Thanks for any info. 

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I understand your frustration. My new derm has prescribed finesteride. I haven't started it, didn't know about the breast cancer risk. She also said it could be a combo of thyroid and FFP. I changed doses on my thyroid meds., and see a little growth, we'll see if it continues. I have used the CBD oil on my forehead and temples for about 8 months. A little improvement, hard to tell. Best to you.

Thanks for the response. I think the breast cancer risk was when it was used for men for prostrate cancer so it is part of the warnings. I don't know how much of a risk it really is but with my history I wasn't willing to try it. This new dr is still recommending it. I would just love to hear from someone that feels it really worked for them. I had also been going to an endocrinologist and was convinced that this must all be caused by my thyroid but he says no. My levels are fine but I have thyroid nodules.  I also had a positive ANA test that indicated shogren's but I don't have that either.

I've been on Dutasteride (better than Finasteride) for a couple of years now.  I believe it is the only thing that has saved the rest of my hair from falling out.  I also use Rogaine.  I still believe that no one in the world knows how to cure FFA.  I just think all these doctors just keep guessing.  The key is to SLOW IT DOWN....and I believe that is what Dutasteride has done for me.

I'm curious why you believe dutasteride is better than finasteride. Thanks!

Irisheyes,

I'm glad you found us here in the LPP/FFA support group.  I know it's one you wish you never had to belong to.  I have found a lot of support and advice here and so appreciate all of the brave women who have shared their struggles with medication, doctors advice and depression that this stupid disease causes. 

I was diagnosed in April 2016 with LPP and was put on doxycycline and clobetesol foam.  I lost a lot of hair on the sides of my head so I'm not sure it really worked.  My front hairline was spared until this past November when FFA arrived and began gobbling up my hair at the forehead like Ms. Pac Man.  The dermatologist kept me on doxy but switched me to tacrolimus ointment for the rash.  I think it got worse so back I go in January to the derm and she stops the doxy and switches me to hydroxchloroquine which I am now taking.  She said it would be 3 - 6 months before I could see any results, if that even happens.  I have tried CBD oil and aloe vera gel on the hairline but I only see more loss and recession.  This is the most frustrating thing to deal with!

I tried to take Finasteride but 12 days into it my head felt like it was on fire and the pain was pulsing through my scalp.  Also my lips and the right side of my face felt tingling and numb.  I quit taking it because I thought I was having an allergic reaction to it.  It also made me feel really depressed.  Four days after I stopped taking it the burning and tingling stopped.  I wanted so badly to be able to take it because all of the research shows that it is about the only thing that has been successful in stopping the hair loss progression.  It just didn't work for me. 

So many of us on this site have tried various medications, some with success, some without.  LPP/FFA has a mind of it's own and attacks us all in different ways.  I just keep fighting to try to keep what is mine and handle it one day at a time. 

Big hugs to you.  

Hi all, any side effects from the dusasteride? And what dosesge.  I was prescribed oral rogaine has any one used the topical product with success?, Thanks

I do have breast tenderness from the Dutasteride.  Nothing else I've noticed.  I use topical Rogaine with no problems.  Just don't go over the recommended half a capful.

Hi,

I have been on Doxycylin, Finasteride and Plaqunenil for three years now together with different  ointments. without any significant success. I have even tried AIP diet without success.

Four weeks ago I was prescribed Methotrexat (strong immun supressant) and for the first time in three years my hairdresser told me that my scalp is almost normal!! No tenderness, no red inflämed areas, no bumps (they seem to have "dried up"). I have some minimal hairgrowth as well. 

I have a new appointment with my Derm in April and I do hope he will say the same thing - I really can´t loose any more hair, it is really hard to cover all the hairless spots aswell as the hairless temples.

Good luck to you all!

I have been taking Finesteride for 18 months. My doctor doesn't want me to stop because she says it may not stop but definitely slows the progression of hairloss from FFA. I take 5mg daily. I've been skeptical until recently. I picked up a new prescription recently and the pharmacist wanted to consult with me. He was new to that pharmacy. He asked if I was taking it for hairless and I said yes. He said I should only need 1mg/day. He said there were studies that cited that. I couldn't find studies specifying 1mg but some specified 5mg. He suggested that I cut the pills in 1/4 because 1mg would be a custom order and much more expensive. I called my doctor but she was on maternity leave. I sent her an e-mail to her office but didn't hear back. I decided to experiment for 1 week. I cut the pills in 1/2. Within a few days I started shedding hair like crazy. I went back to 5mg and it slowed the shedding in a few days but took a few weeks to let up to normal shedding. Is anyone else taking a dosage other than 5mg?

Hi Diart,

I take 2.5mg a day.  I cut a 5mg pill in half.  

Karen

Same here. I have been on 2.5 mg a day for about 2-1/2 mos. I am cautiously optimistic. I see a little growth. Any is a plus for me.

My dermatologist put me on 5 mg in January but I seemed to have an allergic reaction to it so I stopped taking it.  When I went to see her about 4 weeks ago I discussed that with her and she told me to break the pills in half because I really didn't need 5 mg.    Haven't seen any results yet but I am hopeful.  Everything I read seems to say that it really helps to stop/slow the progression.  Fingers crossed!! 

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