Just diagnosed with FFA

I have been losing hair for about a year I’m guessing. This last spring is when I noticed my sides at the temples were receded far back than I had ever noticed, can’t put the sunglasses on my head without making sure to pull some hair over back toward front. Went to dermatologist yesterday & she diagnosed me with FFA. I told her I had been using Rogaine for women since August & she said that was great. I was using the 2% minioxidil but she said 5% is better, 2% doesn’t do anything. She gave me a prescription for clobetasol to use twice a day first two weeks then once a day. Then to go back to see her & then she said she would try injections or a pill. I’m really scared as to how much hair I’m going to lose before it stops. Any input would be helpful.

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Replies to This Discussion

Permalink Reply by WandaRussell on October 7, 2017 at 10:12pm
I'm in your same boat. I just found out I have FFA to. It nice to know that my dermatologist is doing what other dermatologist are doing. I go to a specialist in Portland next week. Not covered by my insurance but I would give up all my luxuries if it meant I got to keep my hair. I wish for the best for you. Sorry you have to go through it.
Permalink Reply by Donna on October 7, 2017 at 11:00pm
Thank you Wanda & I was wondering what kind of specialist are you going to?
Permalink Reply by WandaRussell on October 8, 2017 at 4:37pm

NW Dermatology and Research Center, LLC

2330 NW Flanders, Suite 201

Portland, OR  97210

Phone: 503-223-1933 ext. 107

Fax: 503-223-1947

www.pdxskinandhair.com

Permalink Reply by illustr8r on October 8, 2017 at 9:06pm
Keep us posted on what your hair specialist says. I’m in the NW and if they are helpful I’d consider a trip to Portland. I’ve got a mindset now to deal with this via diet and stress reduction along with Clobetasol as needed.
Permalink Reply by AnnieMay on October 9, 2017 at 3:28pm

Hi Wanda and Donna- I am so sorry that you both are dealing with this awful disease. It is a roller coaster ride trying to navigate through everything but you will find everyone here so supportive. If you go back through the posts you'll find a lot of good information as well. Keep posting, asking questions or just posting to vent when you need to! 

Wanda- I have been seeing Dr Desai at NW Dermatology since April. Did you already have a biopsy? At my first appt she did a biopsy and when I went back she confirmed FFA. Not a fun day. She has been great but I haven't really learned anything new or different from her. I've honestly learned more from all the courageous ladies on this site. She originally prescribed Betamethasone lotion .05% to use everyday (a topical steroid) for the first two months. But it made my scalp burn so at my followup she prescribed Hydrocortisone Butyr .1% solution and Tacrolimus solution alternating between the two everyday. It's hard to tell if it's helping or if I would be right where I am now without anything? She didn't suggest Rogaine but I started using it about a month ago. I was starting to get a lot of overall thinning and I think it's helped with that. She hasn't prescribed anything else but I'm going to ask about Dutasteride at my next visit. I would rather not take anything as I seem to get side effects from every medication.

I will say that I think changing my diet has helped. I had a lot of itching which drove me crazy! but even after only a few weeks of gluten free and dairy free it seems much better. 

Good luck with your appt. Let us know what you learn.

Permalink Reply by WandaRussell on October 9, 2017 at 4:38pm

I'm scheduled to meet with Dr. Desai Wednesday the 11th.  I've already had a biopsy through Kaiser who identified that I have FFA.  I was told that Dr. Desai is the best so that is where I'm going.  Even though it's not covered through Kaiser.  The Kaiser dermatologist gave me Betamethasone lotion also to use morning and night.  It burned my scalp the first week of using it but it doesn't anymore.  She also put me one Minoxidil 5% morning and night.  I was going to ask about Dutasteride after hearing what Nancy wrote.  Sounds like she has had a lot of success with it.  Since I started using the steroid and minoxidil my hair has been falling out like crazy.  Part of me wants to stop using the steroid and the minoxidil.  It seems to be making it worse.  I'll find out in two days what I should do.  Thanks for letting me know about no gluten or dairy.  I give it a try.  Anything to stop my hair from falling out. 

Permalink Reply by Nancy79 on October 9, 2017 at 7:13pm

I had a positive FFA biopsy. A severe reaction to Clobetosol (burned scalp) and face turning beet red and then all the skin peeled off in reaction to the second med sent me to a medical library.

Steriods are ineffective. Kenolog shots may have little effect and only in the very early acute stage.  They leave the skin so thin that the blue blood vessels show through and disfigures you. The medication travels down the forehead so you can't cover that up with a wig.  You also are left with dents in your head. Pacquinil is ineffective and can permanently damage your eyesight.

Not everyone gets the bad side effects. But if these approaches have been shown to have little to no effect why risk it? I found the best chance was Dutasteride 0.5mg daily (50-60%) with little to no side effects except if you become pregnant.

I started on it 5 years ago and posted it on this blog. I have only seen people mention taking in the last year on this blog. Why has it taken docs so long to catch up?

I also came across an ultra violet hair brush that showed promise. I hate to mention it because it is an expensive piece of medical equipment. I used a two prong approach. Systemic Dutasteride and the topical ultra violet hair brush. My disease stopped where it was and no new follicles became inflamed.

I eat whatever I want. Actually I eat a very poor high saturated fat, high dairy diet. I have eaten more healthy in the past and I notice no difference with this disease. I have exercised regularly and then not at all for long periods and I notice no effect on the disease

I know I am lucky and dodged a bout of this that could have been a lot worse. But I think I did so by getting on medication that showed the best chance of success from the beginning. I feel horrible that every new diagnosed person starts out with the same approach. Like the doc have a checklist and just go down the list until something might work.

I tried derm recommended Rogaine 5% for about 10 days but I shed some effected hair and decided that was enough. I am not the type to put stuff in my hair daily as I do not wash the hair daily. I understand if you hang in there long enough the shedding stops and the hair may grow. But all benefits are lost as soon as you stop it.

I am sorry to be blunt but I do not feel these docs are keeping up with the literature. My derms did not want me directing my treatment so my GP wrote my scripts.

Hope this helps.

Permalink Reply by Jess on October 29, 2017 at 12:31am

Nancy,

I agree with you. I know everyone is entitled to choose the treatment they feel is best for them, but I am a bit dismayed at the number of doctors who seems to prescribe things that the research shows isn't very effective. I have been taking Dutasteride since the end of May, and I believe it is working...I think. It's so hard to tell because the progression is so slow anyways. I haven't had any side effects either, and I don't follow a special diet. I also just got a Google alert that I'm going to post about here in a minute about a study that showed 75% success rates for those treated with retinoids like Isotretinoin. Success rates were largely maintained with the treatment stopped, too.

I think many people are either misguided by their doctors or are weary of taking systemic drugs.

Permalink Reply by Nancy79 on October 31, 2017 at 12:06am

Thanks for the info. I will keep it on file. I feel right now I am in burn out. These drugs look like there could be some severe side effects though.

You are right. Women waste so much time and lose more hair than necessary because docs don't go to the most effective treatment first.

Permalink Reply by illustr8r on October 30, 2017 at 10:01pm

Hi @Nancy79- if you don't mind me asking, are you on hormone replacement (HRT)? I was wondering if there were any conflict with being on Dutasteride and Estraoil etc...

I'm having one of those days and I am going to the dr. tomorrow for my 6 month check up...I'm armed with info! Feel like I need to do more. AIP Diet was great but tough to stick with but I am. However, this past week there has been too many more hairs in the sink. :(

Permalink Reply by Nancy79 on October 30, 2017 at 11:59pm

I only take Vagifem which is estradiol vaginally. Not on any other hormone therapy. Nothing systemic. I saved a lot of time getting on Dutasteride immediately five years ago and lost very little hair.

Permalink Reply by Donna on October 31, 2017 at 1:12am
Hi Nancy, I see you take vagifem. I take Premarin. I don’t know if it’s coincidence or not but seems like my hair loss started just after I started using Premarin. Have you ever considered the hormone replacement creme causes the hair loss?

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