Rare scalp Autoimmune disease… lichen planopilaris

I so understand. Does yours especially itch worse at night. Handful of hairs after washing hair in shower. It’s everywhere. I had extremely think hair before this started. So most people don’t notice unless they see if falling out. I use Routine shampoo and conditioner. I’ve tried so many different products. But it’s still falling out everywhere. The itch is awful. It’s very sad.

Have you gone to a dermatologist?
If one dermatologist cannot help, try going to others, I’m sure relief is out there.sometimes a pharmacist can give you names of good doctors.

4 dermatologists so far. No help yet. 😢

@patsydell your situation sounds really bad and difficult for you. When did you get this diagnosis? When you were first diagnosed, were you started on any medication? Are you still taking it?
Have you thought about going to a comprehensive medical center or university hospital? Here is also a link to an organization that should be able to help you find a good doctor:
https://rarediseases.info.nih.gov/
Can you make some calls on Monday? Let me know what you learn. I really worry about you.

My scalp has been doing this for over a year now red, flaky and hair falling out everywhere every day. I’ve just thought it was part of sjogrens disease. Hoping you find help. I’ve tried oils and many shampoo products nothing had helped. I use Routine shampoo and conditioner. But it continues to be awful. So sorry for you also. It’s miserable I know.

@dancing1 You might also want to find a new rheumatologist. Your problem with LPP must be so frustrating and disheartening!
Here is the website for the genetic and rare diseases organization:
https://rarediseases.info.nih.gov/. And also NORD, national organization for rare disease:
https://rarediseases.org/
Both groups have info and patient resources for diseases like yours.
Will you give one of them a call? I’d love to hear that you’ve gotten some answers

I recently started losing hair. I have hypothyroidism, and Dr increased Levothyroxine. Hair thinning, stopped, but started again. No itching, though. I was at a dermatologist office and saw brochures on Virtue Flourish products for hair thinning. I have never tried it, but I might. Dont use Rogan for men, as your body hair will start growing. Check Amazon and do research on Virtue Flourish and see what others say about it. Check side effects and drug interactions as well. I have also heard onion, onion juice, garlic juice and coconut milk helps with growth as well.

I just saw a new neurologist and he feels I have small fiber neuropathy. I am reading about it now even if my bloodwork biopsy and needle tests come back negative he feels I still have it and could be the reason for so many of my problems. Is there any good info on this. Thank you.

I have had MS and Hoshimotos for 29 years, and in last 5-6 years my hair got thin, then this year pain. It’s as if someone pulling handfuls of individual hairs at the same time. My Derm Nurse Practitioner, doesn’t think it is LPP, but literature I have read is convincing. She want a punch test, which would be fine, if it wasn’t in the middle of the top of my scalp. I’ve had long thick hair my whole life and gray now, it is still long. I am losing my identity a little every day with the amount of hair loss. Any help, thoughts, or remedies would be helpful please……

@twinkle This is the discussion you want to join and read all the different posts. There will be lots of helpful answers for you. Maybe @carolee888 and @patsydell can also come and join in!