Replies to This Discussion

Permalink Reply by 2Dachshunds on September 28, 2018 at 5:36pm

Hi Toby: I got the steroid injections around hairline 2X then I have been treating hairline topically with tacrolimis compounded into cetaphil cleanser per a research article I found that said about 40% of small study group showed some good results. I also started taking CBD oil (the legal kind made from hemp) in tincture format at night. And I alternate the tacrolimis with a CBD oil salve because the tacrolimis is harsh and my skin starts to get red and itch.

I think I see some hair regrowth and my hairstylist said she definitely sees regrowth. So which of the things I did or am doing I do not know, but hopefully, slowly, something is changing.

I also quit SPF chemical and am using a face lotion with zinc oxide instead and trying the anti inflammatory diet AIP but have not been doing it strictly at all.

Hang in there, hugs!

Maria

Permalink Reply by Diart on November 1, 2018 at 12:21pm

Hi Toby. I have been on Finesteride for a year. It has not stopped the inflammation completely. I had an appointment with my doctor today and asked her if I should stay on it. She thinks it has slowed the progression of the disease but did acknowledge I still have inflammation. She also thinks it might be worse if I wasn't taking it. I'm sorry it isn't better news for you. I also eat grain & dairy free, organic etc. 

6 months ago she prescribed Fluocinonide, a liquid steroid to use as drops on the scalp for 2 weeks to stop the inflammation. It was better but flared in the heat of summer and wearing hats. I use it occasionally for hot spots that get itchy. If used too much it causes the scalp to get tough and is counterproductive. Today she ordered 6 weeks of tapered Prednisone to stop the inflammation. She asked me to stay on Finesteride for 2 more months. She wants things to stay the same so there are fewer changes so she knows what works. 

I like that she is cautious and doesn't get too invasive but my hairline is still receding, very slowly. She suggested that if the prednisone doesn't stop the inflammation she can prescribe an immune suppressant. That doesn't appeal to me at all.

I started using CBD cream on my scalp at night (too greasy to use during the day) and taking CBD tincture orally about a month ago. Obviously it hasn't changed anything yet but I'm willing to keep trying that. Those products are about $100/month. I have a friend who grew hemp this year and is making some creams soon and says she can sell it to me for less so that's promising. Best wishes!

Permalink Reply by Toby on November 10, 2018 at 7:17pm

I have FFA and started a gluten free and milk free diet and I think it is helping!  For over the past year, on a daily basis, I have felt the itch and burn of this disease. Since I went gluten free and milk free, I do not feel the itch the same at all. I still have some but but 90% less and not every day like I used to. Hope this helps others.

Permalink Reply by Sha on November 13, 2018 at 12:01am

Hi, I was diagnosed with FFA about 1 1/2 months ago. I lost my eyebrows about 4 years ago and also lost hair on my arms and legs. I had steroid injections 2 weeks ago and am on dutasteride (another version of finesteride), tetracyclin, planquil and using Rogaine 5% at night. I just started all these meds 2 weeks ago, but mine in running rampant! I'm hoping all these meds help soon. Has anyone been treated with an examiner laser? I've read about some very good results from this treatment for FFA.

Permalink Reply by Diart on November 13, 2018 at 3:13pm

I am 60% through a 16 day prednisone treatment to stop the inflammation. It seems to be helping. The itching is gone and I don't see much red on my scalp. The problem is I feel like crap on this medication. Only 6 more days. My doctor sent me an e-mail recently because she didn't have time at my appointment to go into the options for the future. This is her perception of the medication options if FFA flares again:

"While we don't fully understand why FFA happens, we have a good understanding that it is an inflammatory, immune mediated alopecia. It has a very classic appearance on pathology where the inflammation surrounds the upper part of the hair follicle. For this reason, many of the treatment approaches are anti-inflammatory. 

Here are some treatment options we can consider:

1. Plaquenil. This is an old medication that has various uses. As dermatologists, we use it primarily for autoimmune mediated disease, especially in connective tissue diseases such as lupus. There is some evidence for its role in treating FFA. This is, in general, a relatively safe medication and something I would feel comfortable starting at any time for you. It requires a baseline and then yearly eye exams with an eye doctor, baseline labs, repeat labs 1 month later, and then labs every 3 months. 

2. Cellcept. We talked about this a bit at your appointment. This is an immunosuppressive medication that we, as dermatologists, are very comfortable with. It requires baseline labwork. I usually start at 500mg twice daily and then recheck labs in 1 month. If labs ok then we increase to 1000mg twice daily and recheck labs one month later. Then labs are every 3 months unless we increase the dose further, then we always recheck 1 month after increased dose. I have all of my patients stop the medication for flu or other serious illness and resume once better. 

3. Doxycycline. This is an antibiotic that has many anti-inflammatory properties. We use it in acne and rosacea and periorificial dermatitis largely because of its anti-inflammatory properties. It does not require lab monitoring. It must be taken with food and can make you more sensitive to the sun, so you have to be diligent about sun protection, but it is generally very well tolerated. 

4. intralesional kenalog: one approach is to inject topical steroids just below the surface of the skin, targeting the area of the hair follicle where the inflammation is centered. This works better than the topical steroid application because it puts the steroid medication down deeper at the source of the inflammation. This can be combined with any of the above treatments. The risk is atrophy or thinning of the scalp skin, which can cause some depressions when severe. My approach would be to start with a very dilute concentration and then slowly increase depending on response. 

There are many other treatment considerations, but this is a good place to start. We can cut back your finasteride to half the dose you are taking. I would encourage trying to stay on the lower dose, though, because there is also a fair amount of evidence for the benefit of that medication in FFA. 

Please give some thought to which of the above you would like to try if the steroid taper doesn't shut things down or if it flares after coming off the steroid taper. I want you to know that I want to help you and will do everything I can to help you get better. We can work through this together."

I hope this helps. I feel fortunate to have a caring doctor who knows what FFA is and how to treat it since I live  in a tiny town in the middle of Colorado. Other options involve 2-3 hour drives through the mountains.

Permalink Reply by Johny Jons on November 23, 2019 at 2:12pm

Such oil can be helpful from many health problems. I definitely recommend to try it! But be sure that you buy only high quality premium products. It is quite important for good effect. For example you can try this mint oil from https://premiumjane.com/cbd-oils/mint/ it is my favorite!

Permalink Reply by Lu on December 14, 2019 at 5:56pm

I’ve been taking a minoxidil/dutasteride/spironolactone combination for the past year. Although nothing is going to regrow the hairline hair, the serial photos my dermatologist takes shows thickening up of my scalp hair. 

Permalink Reply by Louise on December 28, 2019 at 4:07pm

Hi Toby,

I am sorry to tell you, I really don´t think any medication will help us.

I was diagnosed 4 years ago and for the past three years I´ve been on Plaquenil and Finasteride, didn´t help at all. Since a year I´ve been on Metotrexat, which was very helpful for the first six month, but now I am back to itching,  burning and bleeding wounds and more hairloss. I have lost both sideburns and about 1.5 cm in the the front, the rest of my hair is so thin, that you can see my shining scalp. Due to my burning head I can´t use toppers, wigs or anything on my head. As you understand my social life is more or less over and my mental health is below zero. IT IS A HORRIBLE DISEASE! The worst thing is that my friends and family just ignore me.  I really don´t have any support at all.

Just to describe how deep this disease affect you I will tell you about a horrible incident I experienced a month ago - I broke my hip! I can´t even describe the pain before and after surgery.

Suddenly, everyone felt so sorry for me, I got flowers, cards and presents. But… my leg will heal, my hair won´t. That is what I can´t explain to anyone. Just before surgery I screemed to the nurses, DON`T TOUCH MY HAIR. I know it sounds bisarre, but that how it is. I am not depressed by my leg I am depressed by my non existing hair. The FFA slowly kills me and I know after four years that nothing will help me or us. 

I believe I have sisters out there who have exactly the same deep, destructive feelings about this.

Take care