Replies to This Discussion

Permalink Reply by Nancy79 on November 13, 2018 at 12:53pm

Hi Chelsea,

I'll tell you what worked and is still working for me.  I had bad experience with two dermatologists with bad side effects to drugs. I went to the local university medical center library and did my own research. Dutasteride 0.5 mg daily had the best chance of stopping FFA (50-60%) with little to no side effects (there are sexual side effects for men).  The follicles that are already inflamed will continue to fall out but no new follicles will become involved.

This is what happened to me. The originally affected follicles are falling out so slowly I don't even look at it anymore. I have had no side effects. I had also developed overall shedding of hair from time to time before the FFA.  It was short lived so I did not pay any attention to it.  I have been on Dutasteride now five years and tried stopping it a couple of times.  The overall shedding started right up and took a few months to stop even though I started back on the drug after a few weeks of shedding.  I am now convinced I will have to take it the rest of my life.  I pay cash for the drug at Costco (roughly $10 per month or less).  My copay is much higher if I run it through my insurance.

Hope this helps,

Nancy    

 

Permalink Reply by Diart on November 13, 2018 at 3:59pm

Thanks for the information Nancy. I'm going ask my doctor to switch me from Finasteride to Dutasteride. Since they are in the same family she might be agreeable. If you know of any studies you can point me to that show the 50-60% effective rate, I would appreciate it. I hate the sounds of some of the other meds. If you have to have kidney and liver testing before taking and periodically while you take it, that's not a good sign. 

Permalink Reply by Nancy79 on November 13, 2018 at 4:28pm

Dutasteride was shown to be twice as effective as finasteride. I will have to look up the studies.  Nancy

Permalink Reply by Diart on November 13, 2018 at 3:53pm

I posted this on another part of the site but you may not find it so I'll post it for you here. I have taken Finesteride for almost a year. It doesn't seem effective but my doctor says it may have been worse without it. I'm 10 days into a 16 day prednisone treatment to try to stop the inflammation and therefore shedding. My doctor didn't have time to go into the options for the future at my appointment so she sent me this e-mail:

"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."