Dealing with Lichen Planus: Any tips or experiences?

I am unsure if this is the appropriate forum for my inquiry—if I have misstepped, I ask the moderators to move this accordingly 🙂

To be direct: I am struggling with the aforementioned condition and have been prescribed Decortin at 40mg—which I have been tapering down to 5mg...
The symptoms subsided briefly, but they are now resurfacing

My attempts to find reliable information online have yielded absolutely nothing...

Medical professionals—I need your assistance🙂

Greetings! Is there anyone here struggling with this specific skin condition who might be able to offer some advice, or perhaps suggest something that could actually soothe this unbearable itching?
To be honest, my grandmother is suffering from this ailment and it has become absolutely unbearable; the itching across her entire body is driving her to her wits' end. We have tried everything under the sun—steroid creams, various ointments, you name it—but nothing provides any relief. It is truly devastating to watch. I would be immensely grateful if anyone had any suggestions or knows of something that actually works.😢😢😢

Thank you 🙂

Hey there,

Has anyone here ever dealt with "lichen ruber planus"?

I'd love to hear any info you might have...

Also, if you've tried light therapy for autoimmune stuff like this or psoriasis, let me know how that went.

Samuel Jones7 said:Hey there,

Has anyone here ever dealt with "lichen ruber planus"?

I'd love any info you can share...

Also, does anyone have experience using light therapy for autoimmune stuff (like lichen ruber planus, psoriasis, etc.)?

Sorry, I just saw this post. A relative of mine went through this about two years ago. She had it all over—her whole body, even her scalp and inside her mouth.

She was under an incredible amount of emotional stress at the time, and as soon as things calmed down, everything started clearing up within about two weeks. (Some of it cleared up from using steroid creams, but the parts she didn't put cream on actually healed on their own)

Unfortunately, she still has some spots left on her body, but she's doing much better now. Let's say she's about 60% improved. I don't know how much comfort that provides right now, since I know how desperate she felt. Aside from managing the stress, she didn't change anything except taking some basic multivitamins.

I really hope you feel better soon.

Has anyone here actually dealt with Lichen planus before?

Like, how do you even manage this thing? What kind of treatments actually work, and more importantly, what are the absolute biggest no-nos I should stay away from?

So, I just saw my dermatologist and honestly? Total waste of time. They offered absolutely zero solutions. All they could tell me is that I might see some spontaneous clearing over the next few years, but then again, expect it to flare right back up. Like, thanks for nothing, right?
Now I’m stuck playing phone tag and waiting for appointments with other specialists.
Does anyone here have actual recommendations for doctors who actually know what they're doing when it comes to this specific condition? Please, help a person out.

The steroid creams haven't done squat, and since it's covering such a huge part of my body, there's only so much you can rub on before it becomes a mess.
And from what I've been reading online, it looks like phototherapy isn't even an option available in most clinics around here.

Has anyone actually dealt with this? Is there any kind of approach that actually helps even a little bit?
What should I be eating—or more importantly, avoiding? Should I be running food intolerance tests, soaking up the sun, or staying completely in the shade? Does applying heavy, greasy ointments help, or should I be looking into physical exfoliants? Seriously, anything at all.

Right now, it's hit all four of my limbs and it's starting to spread across my torso too.

Go ahead and buy a phototherapy lamp. It isn’t exactly a cheap little purchase—certainly not a small investment by any means—but if it actually works, I suppose there aren't really any other options out there.

mellowskipper said:Just grab a light therapy lamp. Look, it’s not exactly cheap, but if it actually works, you don't really have any other options, right?

But how are we supposed to know if it even does anything?

And did they ever reach a verdict on whether LP is an autoimmune disease or not, or are they still just sitting on their hands?

Emily Ortiz27 said:Has anyone dealt with Lichen planus before?

Not sure how much this helps, but here’s my experience. When it first hit me nine years ago, by the time we got a diagnosis, most of my body was covered—pretty much everything except where the sun hits, like my face, neck, and arms. Creams were mostly useless, except for one time when a doctor gave me a custom blend to dab onto each spot individually. It took a while, but that actually calmed things down. I don't know the exact formula, but it was definitely high-strength steroids. I also took pills to kill the itching. You just have to be patient; the goal is just to see improvement. The spots or scars lingered for about a year or eighteen months—it receded slowly—but I didn't mind that part as much. As long as it stopped bothering me physically and mentally, I could live with it.
The sunlight wasn't an issue; if anything, I spent more time outside because the sun-exposed areas stayed clear. That's not medical advice, just what happened to me.
Back then, there wasn't much info out there, so I'm not sure what the standard is today.
It flared up again about five years later, but only in one small area. We went straight to the doctor, knew exactly what it was, used cream and pills, and it cleared up fast without spreading.
I felt the same way when they told me it was chronic and likely to recur, but honestly, the second episode wasn't even worth mentioning compared to the first.
Also, watch your stress levels. Chronic stress can be a trigger; at least that's what I was told during both episodes. I don't know what else to tell you, but I'll leave it at this: the hardest part is finding the right treatment. Once you nail that down, it gets easier. I don't even think about it anymore unless I read something about it. I suspect it'll be the same for you—you just have to find what works.
As for light therapy or other stuff, I don't know.