A Hairy(less) Situation

October 3, 2019 7:25 AM

I have been diagnosed with frontal fibrosing alopecia. Wondering if anyone has had experience with Plaquenil or Propecia in treating this disease, or with the disease in particular.

I have been diagnosed with frontal fibrosing alopecia, which basically consists of losing hair along the front of the hairline, severe itchiness, and loss of eyebrows. Still trying to get my mind around it. Hair follicles that are lost will never come back, but I have been given the option of taking two oral medications that might help to at least stop the current progress. Both have issues, and neither are indicated for this disease. The first, Plaquenil, is relatively safe for women but would require regular blood checks for possible kidney and/or liver issues and eye checks for possible peripheral vision loss. The other is Propecia, which is not indicated for women at all and you CAN NOT get pregnant on it (not planning to, but there is still a very miniscule possibility). Has anyone had any experience with this type of alopecia or with either of these drugs (particularly taking Propecia as a woman)? Thanks for any help.

posted by ElleElle to Health & Fitness (7 answers total)

I’ve taken daily plaquenil for the past 7 years with zero issues. I’m a woman with an autoimmune condition that includes skin issues and itchiness. I do flare less on plaquenil than I do without it.

The eye checks are a bit annoying because they like to dilate you, but I’ve had no vision loss at all. It’s super rare to have vision changes on plaquenil - they mostly require the checks because other similar drugs can cause issues.

The blood tests are nothing. My liver numbers have never even twitched.

I’ve never used propecia, hopefully someone else can help with that.
posted by invincible summer at 8:29 AM on October 3, 2019

I know this isn't the same, and in particular doesn't cover the uterus situation, but a lot of trans women who are on hormone treatment (and so are hormonally and biochemically similar to cis women) take Propecia.

You might look into stuff about it written with trans women in mind to see how it will affect someone with your hormone levels. But as far as I'm aware, people generally find it safe and effective, and anecdotally, nobody I know has had a worse experience than "Eh, wasn't helping enough to be worth the hassle of taking another pill."
posted by nebulawindphone at 10:22 AM on October 3, 2019

There's also an eyelash-specific drug that works (off-label) for all kinds of hair as well, bimatoprost, trade name Latisse.
posted by Kreiger at 11:21 AM on October 3, 2019 [1 favorite]

I also have a form of scarring alopecia which is devastating and permanent. You will have the hardest time with covering the lost hair patches that still have skin cell damage and will.itch like the Dickens with the slightest foreign material next to it. The Propecia has moderate follicle regrowth but it's a trick of the mind- the slightest variation in Hair PH, diet, sleep or weather will affect the positive updraft at any given moment. And once the product is discontinued for longer than a week all new growth falls right back out. Your best bet is to check your thyroid or estrogen levels for any genetic anomalies. Mainly it's a costly and frustrating downhill battle trying to keep your feminine wiles about you with only minimal progress. I'd invest in a mild detergent for your nightcap and a high end lace cap wig.
posted by The_imp_inimpossible at 2:54 PM on October 3, 2019 [1 favorite]

Oh, there is Minoxidil which is the equivalent of propecia and safe for use by women. Propecia is made specific to Male baldness . Pregnancy may be last on the priority list of a woman going bald but even handling the pill is supposed to cause catastrophic birth defects in even the conception.
posted by The_imp_inimpossible at 3:03 PM on October 3, 2019

I don't have any experience with the medications you mention, but I do have a form of alopecia that just affects my eyebrows - I have no eyebrow hair. I did not want to take prescription meds that may or may not work. Instead, I had my eyebrows microbladed and they look amazing. Its similar to tattoos, but the effect is so realistic, its unbelievable. Just something to consider if the meds dont work out. Good luck, sorry you are going through this.
posted by j810c at 5:56 PM on October 3, 2019

(Just to clarify, Minoxidil and Propecia aren't that similar. They're different chemicals that work in totally different ways — one affects how your body treats some hormones, one affects blood flow. They do both work well. But if your doctor's recommended one, the other might not work.)
posted by nebulawindphone at 5:37 AM on October 4, 2019 [1 favorite]