Lichen Planopilaris...newly diagnosed

I was told by a doctor and a dermatologist that seafood can irritate a skin condition so I did eliminate it from my diet. I think it’s probably different per person but just thought I would mention it. It might be worth eliminating to see if it makes a difference. Like all these things it’s a case of trial and error.

I was recently diagnosed with lichen planopilaris. I am in shock. It is tough to take in. Had some shots and taking oral minoxidil and putting an ointment on my scalp 2 x a day. I have no itching.

I’ve had open heart surgery, skin cancer/Mohs surgeries,
Had many suspicious spots/moles frozen off. Have hypothyroidism. I’m feeling a bit frightened over the whole thing. heard once you get an autoimmune disease likely t9 get more.

Since my quad bypass in 2016 I’ve been on the Plant Paradox diet…..pretty clean.

My dermatologist told me to get all my cancer screenings.

Thanks for any support and insights.

@olive1111, thank you for your feedback and suggestions from my earlier message. I followed up on you advice and started acupuncture last week. The acupuncturist suggested I try a low histamine diet for 30 days to see if that helps with my symptoms and it has definitely helped reduce the scalp itch. I am planning to continue with weekly acupuncture and have started doing yoga again. Also, going to look for in-person tai chi classes by where I live.

Thank you for your help!

@maralina I am sorry to hear about all of your health challenges. I too have recently been diagnosed with LPP and am still in shock. I am very fortunate and do not have any other health problems...so trying to focus on bright side and be grateful. However, I have some fear in the back of my mind that this is the tip of the iceberg and waiting for the other shoe to drop.

As for what works, it is different for everyone. I have just started acupuncture and a low histamine diet. Doing those two things has helped reduce the scalp itch. However, I am not sure if it's helping reduce the hair loss. Also, I am taking biotin supplement, using Minoxidil foam (but going to change to the oil), steroid ointment (2x a day) on scalp, and using a red light cap. Looking to start tai chi to help reduce stress in my life.

Hope some of this information helps.

This is exactly what happened to me. I was at the dermatologist for something other than what she found. She started doing a skin check and got to my head. She said, oh my, this isn’t normal age related hair loss. She did a biopsy. It came back positive for scarring LLP. My hair loss has been going on for several years. I was told….anesthesia, age, etc. She put me on hydroxychloroquine and also gave me a topical steroid. At my follow up appt, she said that it has settled down quite a bit. I wonder if there is anything else that I can do….i do get my hair colored ever 5 to 6 weeks. My dermatologist said that is fine to do. As the topical goes, she told me to put five drops in my favorite oil (like baby oil) the rub it in. I just do straight steroid into my scalp. Any other suggestions?

I was recently diagnosed with Lichen Planopilaris at a routine dermatology exam. I had noticed an area where my eyebrow hair would not grow and a thinning area of hair just above that. She looked at my scalp and explained it as an autoimmune disease. I also have had SLE for over 23 years. She prescribed a topical gel and a steroid cream to be applied for a couple weeks. As I read here, most have had a biopsy to diagnose this and some have had injections. I’m wondering if it can be correctly diagnosed without testing? I would appreciate any conversation about this.

Thanks for some info! Same boat with all of this crew: headed into a storm I didn't know was coming. Quite unsettled to see a dermatologist for cancer screening (all is good there) only to get a diagnosis of something I had never heard of! He prescribed Clobetasol (a liquid steroid) for my scalp twice a day and Nicotiamide(B3) caps daily. Can you explain what a "low histamine" diet is? And what is a "red light cap"? Also, I don't want to feel shallow, but hair loss is creepy/weird/Halloweenish scary......

Of course, I am not losing hair where it would be helpful.....

@maralina My doctor also prescribed Clobetasol for my scalp 2x a day. He has me now using it 1x a day for the next 3 months. Haven't heard of Nicotiamide (B3) capsules but will look into them. My doctor told me to take a daily Biotin supplement.
A low histamine diet is very restrictive. The point of it is to get all the histamines out of your system because they cause inflammation and can lead to skin allergies, etc. Histamines naturally occurs in food as it ages/exposed to air. Here is a link that will tell you more of what it is about and what you can and cannot eat. https://www.verywellhealth.com/what-is-a-low-histamine-diet-4694529
Here is a link that can explain the red light cap https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8906269/

Lastly, don't feel like you are being shallow about hair loss. It is very difficult to go through and society/marketing makes it twice as difficult for women. I am trying to go zen about the whole thing and some days are better than others. Mostly trying to focus on the positive and luckily hair pieces and wigs have significantly improved over the years...so there are options.

You need a biopsy to get an accurate diagnosis. There are several other illnesses that can look similar to LPP.