Lichen Planopalaris hair loss autoimmune disease

Good morning, Penny

I haven't seen this subject of hair loss and some auto-immune diseases combined as a topic before. Thanks for acknowledging this.
My hair loss has been slow, over a period of about 8 years. Lately I have had to become rather rather inventive to cover things by a side part in my hair. This is not a great solution, however. I don't think I am kidding anyone
Haha!
Aside from a wig or hairpiece, what is one to do?

Thanks for replying! I don't really know what my plan is or will be. A day
at a time for now!!

@charlottet @pennybieler58 Hello! I was diagnosed with Hashimoto's almost 37 yrs ago. In 2017 bald spots were found and diagnosed as Lichen Planopilaris. New spots stopped occurring for 7 years but have started again in March of this year, along with a red scalp. Treatment for the red scalp has not worked and frankly, I'm afraid to look for more bald spots. I don't know what else to do. I wear hats often, so I don't have to be self-conscious about it. I think I need to learn how to do scarves on my head 🙂 Do either of you have other Autoimmune diseases?

Welcome @suzannemoe, It's great to see that you have connected with @charlottet and @pennybieler58. I just thought I would jump into the discussion and share an article from 2022 to see if it may be helpful.

-- Lichen Planopilaris Responsive to a Novel Phytoactive Botanical Treatment: A Case Series
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9276860/
Google Scholar also shows 3 newer articles from 2024 - https://scholar.google.com/scholar?as_ylo=2024&q=Lichen+Planopilaris+%2B+Phytoactive+botanical+treatments&hl=en&as_sdt=0,24

Thanks John. I will send a portal message to care team with this information and see if they respond. Clobetasol has done nothing for me. I wish all articles had simple summaries. 🙂

Hi Suzanne;
Thanks so much for your message.
I have Mixed Connected Tissue Disease, a complicated condition that is chronic and baffling. It seems to me that having an auto-immune disease is akin to decifering a complicated puzzle, on an ongoing basis.
I have fatigue, mental confusion, a nerve condition, and a few undiagnosed things going. I am 71. Up until 6 years ago, I was hale hearty. Not anymore. I still walk an hour most days when fatigue is not plaguing me. Tomorrow I have a MRI to investigate the condition of the white cells on the top of the brain. This is important. If you lose too many, your lifetime is shortened. Not cool. Haha. Ya gotta laugh if you don't cry.
And you, Suzanne?

Hi Charlotte, I am 72 and could not agree with you more about the complications of autoimmune diseases! Every time I turn around I feel like some other issue has surfaced. I question whether they are related to the SLE I was diagnosed with in 2022, or just aging issues or hereditary/gene problems. Where I live in BC Canada, the health care system is overwhelmed and getting adequate care is difficult. I'd love to get a full body MRI. Scan everything and find everything. LOL, wouldn't that be something? Impossible here. I could fly to California and pay for one, but I cannot afford that. Anyway, I was hoping your results are Okay, and you let us know how it goes. Good Luck Charlotte!