Recently Diagnosed with Lichen Planopilaris (scalp)

Hello all, I have been diagnosed with LP of the skin which includes the scalp about 3 1/2 years ago. I have found a anti inflammatory diet has helped but difficult stick to, I try to eat a lactose free diet for this is what causes my inflammation and gives me honorable gas pains. Ive never in my life had a problem with lactose till I was diagnosed and started taking things out of my diet and found that lactose was the source of my breakouts, and every time I eat something with lactose I'd find a new itchy spot the next day. I eat 1 to 2 organic hard boiled eggs a day as they are loaded with a lot of good stuff, I take a daily supplement of omega 3-6-9 in one pill which contains a combination of fish, flax and borage oils to help with inflammation and help promote skin health, no fishy taste or smell. I also take a probiotics 2 to 3 times a day with meals to help support a healthy immune response. However, I have found the greatest help with inflammation from CBD, I take 25mg a day and have been doing so for a year. CBD has great anti inflammatory properties and helps with anxiety disorders, muscle pain and spasms and much more. The 25mg a day is what seems to work the best for me, I take it in the afternoon as it tends to relax me and helps me sleep through the night. I use a lotion with tea tree oil on my scalp called "dare to be bald" and I add three drops of lavender oil to it in my daily routine, lavender is suppose to help stimulate hair follicles and the tea tree helps with my scalp health. I've seen some new hair growth on my scalp and some folicals have begun to show multiple hairs. I wouldn't say this is a cure but I stay vigilant with it. I've been symptom free for about 2 years, my scars have about disappeared and I'm learning to deal with this LP. I hope this helps everyone who reads this, god bless

I’m a 31 year old male who just been diagnosed with this after I noticed a small (but noticeable) amount of hair loss. I’d be lying if I said I wasn’t at least a bit terrified.

Is there any improvement or advice you’re able to offer me?

Hope you’re improving.

Scott

After years of not addressing my disappearing eyebrows with recurring regrowth or total loss of body hair. I finally went to a Dermatologist with insane itching and hair loss that started on the sides with moderate loss progressively moving backwards from hairline.

My creativity in hiding my loss was no longer effective. Finally, I went to a Dermatologist. He did a biopsy on my skin and scalp I have Lichen Planopilaris

I'm big on research and alternative natural ways. Perhaps this information will help you or someone else, It cant hurt.

I've learned that many who had Lichen Planopilaris also have Sibo or and Candida. I was diagnosed last year with SIBO. A year later, now Lichen Planopilaris, I really wanted to make this point, these conditions may be linked . Also Lichen Planopilaris is a autoimmune disease that attacks the hair follicles in degrees. Causing inflammation on the scalp, skin even toenails and other things as well. Our body is attacking itself.

Many people have success stories that take commitment. I went searching for these stories.

What I've done so far... even before I was diagnosed. The itching was bad, I use a shampoo and conditioner called Advance Formula Honey Skin the itching has improved significantly. But no cure for hair loss.

I use the steroid cream as told by my doctor but very sparing because of concerns. Hoping that life changes will kick in eventually.

This is my program I think I'm starting to see improvement. It might be to soon to tell.

My program is to eliminate inflammation through diet to start. I've started taking Tumeric Extra Strength, Vitimin D-3, ( its been found many people with LP are vitamin D deficient), Complete Omega that's purity tested, Raw B Complex, Women's Daily all of these are GMO free and organically sourced. I'm working on eliminating foods that cause inflammation. No wheat, sugar and just started eliminating dairy. I drink Kombucha daily and fermented foods and a spoon or two organic coconut oil, I started eating mushrooms regularly, which are extremely anti inflammatory.

I've noticed some small changes in a short time, like my eyebrows are staying put longer. The progressive hairline loss is slowing down. So I will be adding some other items recommended by success stories and general research. This is expensive but so is the doctor.

I'm slowly adding to my arsenal next is Horsetail and Nettles tea and Blackstrap Molassas.

I would like to mention that extreme outdoor heat may aggravate this condition. I wont use warm water to rinse my hair anymore just cool or cold. It seemed to restart the itching and marbled red scalp. I hope some of this is helpful. But you should research it you haven't already.

This is great and helpful information. Thank you for sharing. I have been evaluated by 2 dermatologists (well, one was an "e-consult" so she only saw a picture and the second was a dermatology NP) . The first said I have trichotillomania based on the picture my PCP sent her but I don't pull my hair out). The second said the hair loss is caused by iron deficient anemia which I do have. I have been anemic for close to 20 years if not longer. I recently got 2 iron infusions which brought my levels up. I practically had to beg for the infusions. I think I am seeing hair growth but it might just be wishful thinking. I have an appointment with a dermatologist at the hair loss clinic at Mass General Hospital in May. She specializes in scalp biopsies. My previous dermatologist (well, NP) refused to do a biopsy. I tried clobatesol for about 6 weeks but stopped because I don't think it helped much, if any, and like you, I don't want to use a steroid long term.

All that being said, I started seeing a functional medicine doctor and my labs came back positive for candida. Many of the things you are doing have been suggested by the functional medicine doctor. I am meeting her on the 25th to formally go over my labs and get her recommendations.

My hair loss is a bit different from yours. I'll attach a picture. I'm convinced something else is going on and that it's an autoimmune disorder. Hard to believe I saw a rheumatologist a few years ago for fibromyalgia/chronic fatigue and the only lab he did was vitamin D which was low and is still low. The functional medicine doctor has me taking 10,000 units of D per day.

I agree with you, I spend so many hours researching the "next therapy" for this skin condition and getting nowhere with doctors and specialists. It's kind of mind boggling how the system works.

I hope you are able to find some answers soon. (I was not able to post a picture )

Hi, which dermatologist are you all seeing? I have seen 4 now, the last two finally agreed my biopsy is correct and I do have LLP. I am now having to get a wig. I am on plaquenil and doxycycline but am worried about the long term affects of taking this. I was with a nutritionist who said I had mild SIBO but didnt think I need to go on a SIBO diet. Bit confusing. I would love to find a good fuctional medicine doctor so if anyone can recommend one, I would be so grateful. I hope it will be allowed on here, we need to help each other. If anyone thinks their dermatologist is excellent please also list them. This condition is horrendous!

Someone within the past few months posted she or he were going to see a doctor at Mass General Hospital in their hair loss clinic. I have not heard back as to any results. I too am trying to make an appointment which I am finding a bit difficult.