FFA confirmed by hair loss specialist; prescribed: Dutasteride, Doxycycline, and Clobetasol w/ Minoxidil

Hi All,

I posted a couple months ago and stated that I suspected I had FFA. After going to one dermatologist who basically said my eyebrow loss was medical mystery, I did a lot of research and decided to go to another dermatologist who specializes in hair loss. I told him I suspected I had FFA, and I thought I needed a biopsy to confirm. After examining me, he said he was 95% sure that I was right, and he said he didn't see the need for a biopsy unless I wanted it. My insurance won't cover anything related to alopecia, so I decided to skip it, although I'm wondering if that was a mistake?

The doctor initially prescribed Doxycycline and Clobetasol, and he suggested I use Rogaine, but he also agreed to Dutasteride after I requested it. Although, he made me guarantee I would not get pregnant because of potential fetal abnormalities. I was researching the Doxycycline and found a study that stated it should be prescribed with caution to women who are of childbearing age and have a BMI of 40 or more because in rare cases it could lead to permanent blindness. YIKES! I am only 34 and considerably overweight. I don't think I'm willing to take that risk. I've also read that Clobetasol only helps with the inflammation, not the hair loss. I do have the occasional burning sensation, but it is tolerable, so I may just stick with the Dutasteride and Minoxidil. The research seems to indicate the best results stem from Dutasteride, so I'm hoping this will halt the progression of this disease.

What are your thoughts on this?

Also, is there a place where you all compile original research? I've come across a few recent studies that I think many would find interesting, but I wasn't sure if I should make individual posts for them and attach the PDFs or not.

I'm so very glad I found this site. It's nice to read posts by people who totally get what it is like to be going through this.

Views: 1866

Replies to This Discussion

Permalink Reply by Ellen on June 16, 2017 at 11:40pm
I just started on Plaquenil this week. I'm sorry to hear you haven't had much luck with it. I feel, like its working instantly or I'm just wishing. I had been on Prednisone for a little while before.

My question is: is anyone losing hair on the rest of their head beside just the front? I've lost a lot of hair all over, but no red dots anywhere except on my forehead.
Permalink Reply by Jess on June 17, 2017 at 12:15am

Hi Ellen,

I have some general thinning on the top of my head, particularly where my hair parts (or perhaps that's just where I see it because that's where the part is). I have read that female pattern baldness commonly co-presents with FFA. I've been using Rogaine for about 2 weeks now in hopes of combating it. Paradoxically, hair loss is also one of the listed side effects of Plaquenil, so I wonder if that's what you're experiencing?

Permalink Reply by Ellen on June 17, 2017 at 1:05am
Thanks Jess!

Not yet, I just started Plaquenil his week.

I have thinning on the top and in the back. But my hair is long so it covers the bald spots.

So glad to hear about the female pattern baldness presenting along with FFA. I have a friend that swears about a shampoo for FPB. However, I don't know the name. Will find out.

You have given me a ray of hope!

Ellen
Permalink Reply by illustr8r on June 23, 2017 at 7:51pm

I've had a general shed of hair I think as I have lost a cowlick I had on the left side of my head. I used to be able to get some volume and bounce with my round brush when I dried my hair but it won't do it anymore. There is a big difference from the middle top on back to the middle top to the front. The front is much wispier and thinner. I keep tracking the 4 hairs that start my widows peak and I hope they hang in there. LOL!

FYI Somewhere on this blog I mentioned that I use Nioxin shampoo. I still do when my head flares but one of it's downsides that it is very drying over time, even if you use the conditioner. I switched back to my Loma products and look/feel my hair is much better. One really bad hair day sends me over the edge...!!!

Permalink Reply by Ellen on June 22, 2017 at 3:04pm

I can deal with the hair loss, but I don't know how to handle what might happen to my face.  Hair loss you can hid.  I can't hid my face!

All we can do is pray for God to take this from us.  I'm open to a miracle.

Ellen

Permalink Reply by illustr8r on June 21, 2017 at 10:32pm
Is there a knack to having your Derm prescribe Finsteride? Do they bring it up or do you have to come armed with studies and proof that it can help? I've only been offered steroid injections (which I was considering but now I'm not so sure), Plaquenil (nope, not risking my eyes for a Hail Mary fix) and Clobetasol which helps or was ( now I am getting pimples on my scalp). I'm torn between do something and just making best of a sh*tty situation.
Permalink Reply by somad on June 21, 2017 at 10:46pm

My dermatologist has been very kind.  Actually, I went to 4 and mentioned my eyebrow loss which they blew off.  When my scalp situation became more evident I went to a new dermatologist who identified it right away.  She even hugged me which endeared me to her forever.  She prescribed the Clobestasol which does make me break out, Dutasteride .5, and just started me on Doxycycline 100mcg which I am not sure about.  I also have hypothyroidism.  I play tennis in the Houston heat often and the idea of a wig is killing me.  When my hat falls off I am so aware of my hairline.  This is not fun.   There is no reason for them not to prescribe.  Ask and you should receive.  My twin brother had alopecia areata and his doctor said steroid injections have not been helpful.  That is one opinion.

Permalink Reply by Ellen on June 21, 2017 at 11:22pm
My doctor said he has NEVER seen anyone with ocular problems.


I have been having a bad reaction to the Plaquenil. An not thanking the nighttime dose and calling him in the am.
Permalink Reply by illustr8r on June 21, 2017 at 11:32pm
Hi Ellen,
I have Stage 3 CKD which makes me more likely to experience the bad side effects since my system can't clear the meds properly, plus I can't even take the full dosage so the benefit doesn't outweigh the risks to my eyesight (plus I'm an artist and it can muck up your acuity and color perception). I'm just paranoid that I've been hit with 3 random things since 2013, CKD, osteoporosis and now this mess. I'm not going to risk my eyes for a homerun of crap. Middle age has not been kind.

I hope that Plaquenil does work for you and the side effects stop. Daily I cannot fathom this stupid disease we all have. *head*desk*
Permalink Reply by somad on June 21, 2017 at 11:32pm

Are you talking about the blindnes caused by Doxycycline?  I am more worried about the sun exposure.  I am in the sun everyday.  That is my worry.

Permalink Reply by illustr8r on June 21, 2017 at 11:41pm
Plaquenil can cause retinal toxicity over time (mostly if you have been on it over 5 years) and you should have your eyes checked before you go on it to establish a baseline-then get checked yearly to make sure there's not been any changes in your eyes.
Permalink Reply by somad on June 21, 2017 at 11:49pm

ah, my derm has never mentioned Plaquernil.  Someone on here mentioned something about Doxycycline.  Just don't like being on an antibiotic for a long period of time.

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