u/OvenDown

My hair is falling out, it’s not growing back, my dermatologist keeps saying he’s “never seen this type of presentation before,” and I don’t know what to do anymore. I’ve only included one picture because I find it just so devastating to look at; it's expanded significantly since I took this a few weeks ago, but this gives you an idea of one of the growing number of issues discussed below ...

I’m 44 and for most of my life had auburn hair so thick I had to stop strangers from touching it without my consent. At 38 I started fertility treatments (a long, horrifying, traumatic and unsuccessful slog).

After my second IVF round, I met a new doctor who suggested something called a “down regulation.” Basically, inducing menopause through medication for a period of months before an embryo was transferred. He prescribed two drugs off-label: Lupron and Letrozole.

At the time, I didn’t know that Lupron was the subject of multiple class-action lawsuits, but I did know both drugs were often used to treat cancer and that side effects included “temporary” hair loss.

I did four of these “down-regulations” over two years, even though the side effects were extreme, and at times, life-threatening. I have so, so many regrets.

During each down-regulation cycle, I noticed some hair loss, but it didn’t fit the general shedding described in the drug descriptions. It started with a small, bare patch (not pictured) at the centre of my hairline; then there was some diffuse regression along the hairline at the front, and my part started to widen, although only slightly.

About 50% of my eyebrows also fell out, but with the help of a lot of Bimatoprost/Latisse, they grew back.

However, my hairline didn’t grow back no matter what I did. I tried LLLT therapy; nothing. Topical minoxidil also did nothing except irritate my skin, and I stopped after 6 months.

Finally, I saw a dermatologist; he thought it was androgenic alopecia and suggested PRP injections. I had three sessions over three months, and no improvement. At this point, I was pretty convinced this was not androgenic.

Then things took a turn for the worse…

I started to notice the hair by my ears was thinning, then I noticed completely bare ovals forming just behind the hairline. Not the type of circles seen in alopecia areata, though; they had soft, diffuse edges.

The derm said he thought it was likely scarring alopecia, probably lichen planopilaris, but wasn’t 100% sure. He gave me steroid injections in the area, and I started taking 100mg of spironolactone. I also started using Bimatoprost/Latisse on the hairline, which is not financially sustainable.

Because I have Sjogren’s syndrome, I was already taking hydroxychloroquine. (I also take iron, vitamin D and pumpkin oil.)

I was supposed to come back in three months, but within the next four weeks I started losing more and more hair, mostly in vertical streaks beginning at the base of my skull and working their way out from my ears.

So I went back, and the derm kept asking me if it was possible I’d accidentally pulled the hair out, and I was like, no, it’s not.

Now the hair above my ears is rapidly thinning as well (not pictured), just behind the hairline on the sides of my face; it’s a ghost town. I just keep losing more and more hair, but almost none from the top of my scalp. It’s like the exact opposite of androgenic loss.

The derm then suggested I start taking an over-the-counter antihistamine that has shown promising hair regrowth in recent studies. I did, but ended up having a severe reaction, which included a panic attack that lasted for days and a resting heart rate over 150.

At this point, after much research, I told my derm that I thought it might be FFA. He said it was impossible, and I quickly realized I was now more widely read on the problem than he was—most of his patients are men, BTW.

I’ve also realized that the spiro is giving me hives, I cannot stop itching, every inch of me is itchy. And I also suspect it is contributing to my recent anxiety, something I have no history of.

But the worst part has been the realization that I did this to myself. Lupron and Letrozole, plus Sjogren’s, caused the perfect storm; I have no doubt. I wish I had known what I know now about these drugs and autoimmune disease then.

I don’t know where to go from here.

It’s unfortunate that Bimatoprost/Latisse is so expensive (aesthetic businesses have a monopoly in Canada …) because it’s the only thing I’ve had any success with.

The next step might be finasteride and oral minoxidil, but I am terrified of the side effects. I cannot go through another days-long panic attack or tachycardia. Losing hair is depressing enough, and the thought of adding to it with more side effects? I just don’t know what to do.