FFA my new prescriptions

I went to the University of Colorado this week to see a doctor who specializes in alopecia and pigmentation disorders. I had been diagnosed by biospy with lichen planiplaris this summer. The new doctor took one look at my head and said I had FFA without even looking at the path report from the scalp biopsy. My other derms just called it lichen planus or alopecia ophiasis pattern. Anyway this is what he prescribed and I wonder if anyone else has used these meds.

Griseofulvin (antifungal) twice a day, minocycline (antibiotic)twice a day and Nizoral shampoo. He said Griseofulvin is an old medication that he has had great success with. He said if I would have come here four months ago he could have stopped the progression. I'm sad about that because I have to wear a hair piece or hat or wig now. No covering it up.

Has anyone heard of this regimen? I hate taking pills, if I have one side effect I won't take it. I tried the scalp shots one round, and decided that is not for me either. I also have a pigmentation disorder on my skin as well as the hair loss. He thinks I have an autoimmune disorder with any underlying lichen (fungal) infection going on.

I'm going to try it and I will keep you posted. He said my hair won't grow back but he can put the hair loss in remission.

Any feedback would be appreciated. Thank you all for listening and sharing. Blessings!!!

PS: They strategically put the dermatology department at the University of CO in the Cancer Center building. I decided after seeing so many cancer patients walking around in a hat like me, that there are worse things that can happen and at least I am not fighting for my life. Physically I feel great, its just the emotional aspects of losing hair. But after seeing these young people fighting cancer, I feel very blessed. Thank you God for beautiful wigs!!!

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Replies to This Discussion

Permalink Reply by sallylwess on November 11, 2013 at 11:35pm

Michelle, I am very interested in what you have to say.  I have been diagnosed with FFA.  I would love to find out who this doctor is that you saw at University of Colorado.  I want to try to see him.  

I know that nothing can be done about the loss, but I wonder about going into remission.  I know I am going through another outbreak, or loss of hair, because my scalp is driving me crazy.  

I have basically been ignored by all other dermatologists when it comes to having any type of treatment.  I am just told nothing can be done.  

This is a devastating disease to have, but you are so right, it is not life threatening.  I am working on acceptance, but it is very hard.  I need to find a wig.  I don't even know where to start.

Permalink Reply by Debs on November 12, 2013 at 2:27am

Hi Sally

Welcome to the group.  I started a thread on here for wearing wigs, if you look at the comments I and other ladies have made you will find info on wigs.  In the USA you have the www.wigsupport.com website that is of particular interest and well worth you checking out.  Also Patti's Pearls have a website and Patti has lots of videos showing you how to wear/put on/wash your wigs.

Good luck with your treatment options.  Deb

Permalink Reply by Michjo57 on November 13, 2013 at 9:59pm

Hi, I saw Dr. Norris at the Univ of Colorado.  I like the residents better than I did him.  He offered me all kinds of drugs with more side-effects.  My scalp did the best on doxycycline and it doesn't really have any side effects.  I have come to grips with it all.  I don't go to doctors any longer because no one agreed on a diagnosis. They said Dr. Norris is an expert in alopecia and he said I should have came to him sooner than I did.  It was too far gone at that point.  I would not waste time if you have hair to salvage he might be able to help you.  Do you live in Colorado?  If you need help finding someone in Colorado to help with wigs, just email from this site and I can go into more detail.  PEACE  Michele

Permalink Reply by sallylwess on November 25, 2013 at 12:52pm

Hi Michele,

I have an appointment with Dr. Norris in February.  Like you, I'm not too keen on using a lot of medications.  I have enough hair left that most folks don't even know I have FFA, but I know it, and I can see the loss.  I don't want to lose more hair.  I am trying to hang on to what I have.  I am looking into getting a wig.  I live in Colorado Springs.  I would like to know your resources.  I also want to have my eyebrows done.  Have you done anything in that department?

I can't email you because you have to be my "friend" on this site.  I have sent you a request.  I hope you are well.

Sally

Permalink Reply by jess on November 26, 2013 at 1:36pm

Hi everyone,

I was just diagnosed with ffa this past friday.  I am only 32.  My eyebrows are mostly gone.  This started a little over a year ago and I went to different derms and they all said alopecia but was not given the right diagnosis till last week.  The new derm put me on the hydroxychloroquine 200mg twice a day.  does anyone know if this will make my hairloss stop?  does anyone know what i can do to keep the hair i have left?

Permalink Reply by Debs on November 28, 2013 at 3:03am

Hello jess

sorry to hear of your FFA diagnosis.  Please read back over past posts on the main part of the FFA group's posts.  You will find we have discussed this in the past and I put a long piece of information on the forum several days ago on saturday 23 November that outlines many treatment options. I am on the hydroxycholoquine too, the same dose as you.  It works in 56% of ladies.  It can slow up/stop hair loss but it is hard to know if it is the drug or that your FFA has simply burnt out.  Please read my piece from the 23rd and other ladies posts. XX

Permalink Reply by Kristen P on October 13, 2014 at 11:10am

Hi Jess! I was diagnosed at 36, but think it had been going on for about three years. My normal dermatologist thought the hair loss was stress-related at first, but about a year ago she referred me to a specialist. How is your regimine going? I was just getting steroid injections and using topicals (Fluocinonide .05% on my scalp and Lumigan .01% drops on my eyebrows - this is technically a glaucoma drug but has the same active ingredient as Latisse and is covered by insurance!) but last week the doctor prescribed minocycline last week. She wants me on it for about three months. Would love to hear how you are responding to treatment!

Permalink Reply by sallylwess on March 27, 2015 at 9:55pm

I was wondering how your treatment was coming along.  Has anything improved?

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