Rare scalp Autoimmune disease… lichen planopilaris

@twinkle35 Here is the previous discussion on lichen planopilaris. You may want to read through it and then ask any questions you want!

You can purchase Chebe powder online and mix it thoroughly into your hair moisturizer. You can also purchase the Chebe butter with it already included. There is the oil as well that you can to your scalp. The hair fall will stop and your hair will begin to grow back immediately. I had a massive hair fall a year ago and my hair began to grow back the moment I began to use it. My hair is back to it's normal length and fullness. I purchased a large quantity so as not to run out because the containers are not very big. If you can afford it then I would recommend that you do as well. I am so grateful I found this.

I also use the black Jamaican castor oil which helps with the fullness and strength.

I also make my own onion oil and rub it in my scalp the night before I wash my hair or up to 2 hours before a wash. Then rinse it out and continue the process of washing and conditioning. You can find videos on how to make onion oil on Youtube. It's very easy.

I know these will help you. Please keep in touch and let me know the changes. Thanks

This must be so distressing! I have lupus, hair loss and scalp itching but not as much as you describe. There’s a Rx steroid solution/suspension that can be applied to scalp, as it is watery, not oily. It’s Betamethasone and your dermatologist could prescribe it. It may help with the hair loss and certainly helps with the itching. Neutrogena T-sal shampoo has anti inflammatory effects. Biotin, a B vitamin, helps prevent hair loss in doses like 5000 u/ day. Use a wide tooth comb and avoid hair brushes that pull on hair. I hope these things help!
Placquenil and Methotrexate, often used in AI diseases, can cause hair loss as side effects.

I am in my 70s and have Hypo thyroid too…no thyroid now…..and other issues too like EDS and MCAS. Hair is for sure thinner but no one know bec I cut it shorter and it has a lot more body and after i use the hair dye I have root spray for touch ups and Topisil powder as well…fills it in and covers up problems.

I’m so sorry. I have the same problems it has not yet been diagnosed as yet. I’m a patient at Mayo Clinic having many tests now and seeing many doctors. My hair drops on the floor daily worried it will end up in my little dogs bowl and our food so wearing a cap most of the time. It’s awful. I haven’t found anything that helped yet. I’m so sorry you have this also. They haven’t mentioned the scalp test. I’m getting it cut very short next week. What ever I’ve tried soft pony tail holders any thing is covered with hair.

I was diagnosed with Lichen planopilorus over ten years ago. It was very painful. Felt like my scalp was on fire and itched terribly. I was using Clobetasol daily and took an immune suppressant for about 3 years. It finally went into remission but I have bald spots all over my head. Luckily I have thick hair so it isn’t really noticeable. Lately I have had a lot of hair loss around my hairline. I don’t believe it has come back I just think it is male pattern balding. I’m a hairdresser and I had never heard of this before in my 40 years of doing hair.

@bren0718 I’m so sorry about the re-emergence of lichen planopilaris. And have you started using clobetasol again? Here is a link to The Cleveland Clinic’s info on LPP.
https://my.clevelandclinic.org/health/diseases/24537-lichen-planopilaris
You’ve probably never heard of it because it’s considered ‘rare.’ But, then again, most autoimmune diseases are considered rare and not too well researched.
Are you going to see the same rheumatologist as before? If you need help finding a rheumatologist who has experience in LPP, you can contact NORD, the National Organization for Rare Diseases. https://rarediseases.org/
What questions would you like to ask them this time?

Hi everyone!
I had punch biopsies done which came back positive for Lichen Planopalaris. It took 3 weeks to get the results & I was called to go into the office to get the results & formulate a plan. In March I was diagnosed with having Shingles. This was the second time I had gotten Shingles & I had the 2 part vaccine to prevent. I was seeing my primary, neurologist, dentist & optometrist. They were on the left side of my scalp, on forehead, in my sinuses & mouth, all on the left side. My forehead was so swollen I looked like a character off of the movie Avatar. So painful. They treated me with several oral medications to no avail. I was sent to a dermatologist who said I had the worst case of shingles on the scalp he had seen. We tried some new oral medications & a prescription scalp oil I had to wear with a shower cap to bed. As months past, I was loosing more hair, seeing more bald spots. He did the punch biopsies that resulted in the LPP diagnosis. He has been giving me scalp injections of Kenalog & steroids every 2 weeks. I have frontal & vertex LPP. He said there is no cure, but perhaps we could slow it down. I am still taking 2 oral medications as well for it. It was pretty devastating news. I have been blessed with a beautiful thick curly/wavy head of hair for 65 years. Now we go forward in faith & grace!! I am so thankful for my loving, supportive husband, family & friends!

Thank you everyone who has joined the discussion on the lichen planopalaris autoimmune post I made 08/24. I do have Sjogren’s as well as Raynauds. I also have epilepsy. I had a seizure at my eye exam last Friday. It is the second time during an exam. We believe it was from the intense lighting. After this one my left side of the face & my eye felt numb. The eye Dr didn't want to continue of course & wanted me to contact my neurologist. The neurologist feels it was an autoimmune response & suspects Belles Palsy. My eye is drooping & won't open completely. My face has more feeling. I have a CT scan today followed by seeing my neurologist. He started me immediately on steroids & an antiviral medication.