1. < Autoimmune Diseases

Rare scalp Autoimmune disease… lichen planopilaris

Posted by patsydell @patsydell, Nov 28, 2022

I have lichen planopilaris where my hair is falling out. From what I understand you lose your hair and it will not grow back. Was diagnosed by having a scalp plug taken out and diagnosed I would like to know if anyone else has this disease and has had any success with any medication’s or shampoos that have helped prevent hair loss. I used to have beautiful thick hair and it’s very depressing I can finding fallen hair everywhere. When I shampoo my hair is the most depressing to see the handful of hair that has come out.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

ch47 | @ch47 | Aug 28, 2023
In reply to @jigster1 "I have Lichen PP and was diagnosed perhaps a year and a half ago. My dermatologist..." + (show)
@jigster1

I have Lichen PP and was diagnosed perhaps a year and a half ago.
My dermatologist has me on 1/2 pill of Minoxidil (2.5 mg) as well as
Dutasteride cap 0.5 mg 5 days per week. (do not take it on the weekends)

I also had microblading done to my scalp (3 sessions) which is basically
tattooing your scalp.

My hair loss is NOT noticeable now and I feel so much better. Have
stopped wearing hats everywhere. I am a Type 2 diabetic so am on some
other medications also.

So far, so good......

Jump to this post

Great that things are going well!!! I have second round of skin cancer, this time directly on top of scalp, center of head. Can’t remember name at moment, but won’t spread to organs. Right in the part line…(first time was 11 years ago)
Will have Mohs end of October.
Unsure of how large scar/maybe just an empty bald spot.
Doctor also rx ing the minoxidil 2.5. As I am 71, decided to have micro blading done for some moderate eyebrows. Found out about surgery between initial procedure and final touch up. I asked the tech if she could micro blade “hole” when healed. She said absolutely! Made me feel so much better…I have mostly grey hair with a few bits of blond/brown mixed in. I don’t color my hair. Did you mix your current colors?
I wonder how long to let heal…
So happy for you!!!

REPLY
1 reply
jigster1 | @jigster1 | Aug 28, 2023
In reply to @ch47 "Great that things are going well!!! I have second round of skin cancer, this time directly..." + (show)
@ch47

Great that things are going well!!! I have second round of skin cancer, this time directly on top of scalp, center of head. Can’t remember name at moment, but won’t spread to organs. Right in the part line…(first time was 11 years ago)
Will have Mohs end of October.
Unsure of how large scar/maybe just an empty bald spot.
Doctor also rx ing the minoxidil 2.5. As I am 71, decided to have micro blading done for some moderate eyebrows. Found out about surgery between initial procedure and final touch up. I asked the tech if she could micro blade “hole” when healed. She said absolutely! Made me feel so much better…I have mostly grey hair with a few bits of blond/brown mixed in. I don’t color my hair. Did you mix your current colors?
I wonder how long to let heal…
So happy for you!!!

Jump to this post

My technician mixed the color for me.
I am 70 but my hair is mostly dark.
Healing was pretty quick, just can't use any heating tools or hot water to wash hair.
It is uncomfortable having it done, but just a small spot should be super easy

REPLY
ch47 | @ch47 | Aug 28, 2023

Praying for a small spot!!!

Last time, filled a birth mark on the back of my head…2”x4” part of my scalp removed…thankfully on back of head…free face lift then?

Thanks for info😘

REPLY
1 reply
patsydell | @patsydell | Aug 30, 2023
In reply to @jigster1 "I have Lichen PP and was diagnosed perhaps a year and a half ago. My dermatologist..." + (show)
@jigster1

I have Lichen PP and was diagnosed perhaps a year and a half ago.
My dermatologist has me on 1/2 pill of Minoxidil (2.5 mg) as well as
Dutasteride cap 0.5 mg 5 days per week. (do not take it on the weekends)

I also had microblading done to my scalp (3 sessions) which is basically
tattooing your scalp.

My hair loss is NOT noticeable now and I feel so much better. Have
stopped wearing hats everywhere. I am a Type 2 diabetic so am on some
other medications also.

So far, so good......

Jump to this post

Is the Minoxidil helping to control the hair loss and what if any side effects. I have autoimmune disease. My hair loss is massive. I USED to have long thick hair and is disease is kicking my butt!

REPLY
1 reply
patsydell | @patsydell | Aug 30, 2023
In reply to @ch47 "Praying for a small spot!!! Last time, filled a birth mark on the back of my..." + (show)
@ch47

Praying for a small spot!!!

Last time, filled a birth mark on the back of my head…2”x4” part of my scalp removed…thankfully on back of head…free face lift then?

Thanks for info😘

Jump to this post

I know that was painful. I had a biopsy which I thought was going to be no big deal and it hurt a lot. Maybe I’m a big baby🥰

REPLY
1 reply
jigster1 | @jigster1 | Aug 30, 2023
In reply to @patsydell "Is the Minoxidil helping to control the hair loss and what if any side effects. I..." + (show)
@patsydell

Is the Minoxidil helping to control the hair loss and what if any side effects. I have autoimmune disease. My hair loss is massive. I USED to have long thick hair and is disease is kicking my butt!

Jump to this post

I believe it is helping. Lately I have been having some low blood pressure issues which may be related to the minoxidil???!!!
BTW, this getting older really sucks
Have a nice day

REPLY
1 reply
ch47 | @ch47 | Aug 31, 2023

I don’t know if the pill minoxidil is helping yet, just started it couple weeks ago. Pharmacist splits 5mg tabs ( for men) into 2.5 for ladies.
I am using it along with the liquid still, until about week + before surgery, end of October.
Won’t be able to use liquid then.
If you look up Rogaine, it will tell you about additional hair loss in the beginning month or two of using it, weak follicles ditching hair, until several months later when you can start to see baby hairs coming back. Once you start, you have to keep it up or the whole loss thing starts all over if you go back to it.
It does work for me…however, even off brand minoxidil is expensive. BUT the pill form is really really inexpensive, so I hope it works. I was shocked…
Check with your dermatologist or maybe even your GP will write the script.
This getting old is like reverse puberty…you whole body changes but you don’t look as good🤣🤣🤣
Hey, the sun is out so life is good-y’all have a nice day too!!!

REPLY
ch47 | @ch47 | Aug 31, 2023
In reply to @patsydell "I know that was painful. I had a biopsy which I thought was going to be..." + (show)
@patsydell

I know that was painful. I had a biopsy which I thought was going to be no big deal and it hurt a lot. Maybe I’m a big baby🥰

Jump to this post

Nah… even the thought of someone cutting a slice of your skin off is painful!

REPLY
patsydell | @patsydell | Sep 4, 2023
In reply to @jigster1 "I believe it is helping. Lately I have been having some low blood pressure issues which..." + (show)
@jigster1

I believe it is helping. Lately I have been having some low blood pressure issues which may be related to the minoxidil???!!!
BTW, this getting older really sucks
Have a nice day

Jump to this post

Go online and see if that’s one of the side effects. That would work for me as I have high blood pressure. Thanks for sharing.

REPLY
patsydell | @patsydell | Sep 5, 2023
In reply to @carolee888 "I also have lichen planopilariasis confirmed by scalp biopsy. I still have it. I received steriod..." + (show)
@carolee888

I also have lichen planopilariasis confirmed by scalp biopsy. I still have it. I received steriod shots in the affected areas of my scalp plus I received a prescription for a steriod cream-Betametasome. I use it every day, finally some tiny hairs started growing but my LPP has moved on to new places in my scalp. I got a refill and have been using it in the new areas. I also have a upper respiratory illness for over a month, so I have not been back to my dermatologist. I made another appt for the respiratory illness, right now, it takes priority. I have drunk a lot of fluidsl had many antibiotics and steriod pack and still can't get over it. Before using the ointment on my scalp, it felt like my scalp was on fire! Have you had that feeling??

Jump to this post

My scalp always is red and inflamed. Also itches like crazy. It is a devastating thing to loss massive amounts of hair every day! I hate washing my hair to see even more hair loss. I use the medicated shampoo that seems to do nothing😥

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.