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 Nancy79 on October 8, 2017 at 6:00pm

You cannot take it if you plan to get pregnant. Men have sexual side effects. Some women report some weight gain of 15 lbs but I did not notice this. Discuss it with your doc. It is a treatment that works 50-60% of the time. I was one of the lucky ones. Even if it does not arrest the disease in a patient it did slow it down.  I plan to be on it the rest of my life. I tried to reduce to taking it every other day and experienced over all excessive shedding. (Not at the hairline)  Went back to every day and the shedding stopped after a couple months.

Permalink Reply by WandaRussell on October 8, 2017 at 4:42pm

Do I need a doctors prescription to get this medication.  Do you take it everyday for life or just a short period?

Permalink Reply by Nancy79 on October 8, 2017 at 6:17pm

The studies had patients take it for a year to 2 years. One study stated the drug was just as effective taking a dose every other day after you had been on a long course of it.  I tried this after being on it 4 1/2 years and experienced excessive overall shedding. (Not at the hairline)  So I went back to a dose every day and plan to do that the rest of my life until something else is shown to be more effective with little side effects. You do need a prescription. It is an off label use of the drug and as such my insurance would not lower my copay when the generic came out last year. My Costco charges $10 for 30 pills. I just pay cash.

Permalink Reply by WandaRussell on October 8, 2017 at 8:04pm

Thanks so much for the information.  I will ask during my visit to be put on it and when they ask me to stop taking it I will remember you.  Thanks so much.

Sincerely,

Wanda

Permalink Reply by WandaRussell on October 8, 2017 at 8:06pm

Can you tell me exactly what you take and how much.  Do you take the generic brand?  I want to make sure that I start taking what actually is working.

Thanks

Permalink Reply by Nancy79 on October 9, 2017 at 3:37am

generic Dutasteride 0.5mg one pill daily.

Permalink Reply by WandaRussell on October 9, 2017 at 9:37am

Thanks for letting me know.  Are you using Monoxidil 5% and a steroid on your scalp?  Are you using special shampoo? Are you on any special diet plan or supplements.  Have you done any injections on your scalp.  I'm so sorry to be so needy.  I just really want to use what works.

Permalink Reply by illustr8r on October 8, 2017 at 9:17pm
I’m going to my Derm next month and I’ll inquire about Dutasteride. She prescribed Plaquenil and I said no way after reading up on it. Besides that and Clobetasol that’s all she offered. My hair is holding steady with the AIP diet but lost it’s tough to stick too. Maybe Dustasteride will allow me to have a donut and a cup of coffee once in awhile!
Permalink Reply by Donna on October 9, 2017 at 6:27pm
What is the AIP diet?
Permalink Reply by Airam-FFA on October 9, 2017 at 12:01am
Permalink Reply by illustr8r on October 9, 2017 at 3:20am
Thanks Airam for the info. So many decisions to make in how to treat or not treat this stupid condition...!
Permalink Reply by Diane H on October 8, 2017 at 1:51pm

I would agree with the other posts here and certainly appreciate everyone sharing their thoughts and concerns.  My case sounds a lot like Donna's, but the dermatologist I saw didn't mention either Rogaine or Minioxidil, which I find interesting.  I am still trying to make more of an effort to get a second opinion since I think a young derm may not have much experience with all of this.  I know they spend years being trained, but I still don't think the chances of seeing a great number of women with FFA are good.  Looking for someone with more experience.

My prescription for clobetasol started just like Donna's for two weeks.  I was told to then take two weeks off and start again and to use only at the front of my scalp.  On the flip side of this, the prescription was written for 5 refills and after two of the two-week periods, I may have used only half of the bottle.  I am scheduled to see that doctor again in December, which makes me think she doesn't expect any rapid difference in appearance.

I also received a call from someone with the insurance company I pay for prescriptions, in the hope that whatever isn't covered by Medicare would be at least partially covered by this insurance group.  The woman who called said they noticed the clobetasol was expensive and it was, but they paid none of that price.  She asked for permission to send my doctor information on a less expensive drug.  My doctor said whatever that drug is, it would be ok for me to try if I wanted.  The insurance company is going to mail the mystery prescription to me to try, but this all sounds rather strange to me, but I will let the group know if the new drug makes a difference, or if I decide not to try it.

In the meantime, Donna, try to think good thoughts and know you aren't alone in this.

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