Lichen Planopilaris...newly diagnosed

I am new to this site. I was diagnosed with LPP 2 years ago. I have had multiple treatments but have had little to zero hair growth. I lost my eyebrows and my hair except for a few spots on the back and one side of my head. I started with steroid injections. Since then we have tried: clobetasol, desonide for brows, tacrolimus, monoxidil 5%, hydroxychlorquine, plaquenil, doxycycline, dutasteride and ketoconazole shampoo. None of it worked for me and keep in mind that everything I did i did it for a minimum of 6 months. In October, 2023, I started using a Jak inhibitor called Tofacitinib. Brand name is Xeljanz. It's a topical cream. It has shown to have some success for some types of alopecia. I'm in my 5th month of using it twice a day to no avail. Not even fuzz. I'd be happy if I could have some fuzz on all parts of my head so it could look like a style but I don't. I have to wear wigs or some other kind of head covering to protect my skin from the weather elements. They're heavy on my head and I prefer not to wear anything at all but if I'm outside of my house I always have some kind of head covering on. My hair growth journey is about over. My 6 month follow up is in April and I'm not sure where we will go from here. I am tired and not willing to have any surgery or laser treatments. These are expensive and insurance will not cover it. Thought about scalp tattoo but that's a lot of sticks. So I think I'm about ready to just accept and embrace my baldness. It's been an emotional journey. I had to consult my opthamologist before taking some of the above medications and had visits every 4-6 months. I was also concerned about what all of this could do to my kidneys and liver so I'm no longer taking anything orally. I wish everyone good luck and success in your hair growth journey.

I was diagnosed last June with LPP but there was no biopsy. I was immediately put on clobestol and hydroxychloroquine and I go in every 6 weeks for injections. No eye appointment first and was told I didn't need to worry for a least 5 years. Last appointment I was prescribed Tofacitinib cream before I was even looked at because someone talked about it at AAD but there are no studies. I was then told for the second time in a row that things were looking really good (so why prescribe more drugs?) I'm beginning to lose faith in my provider. Reading other posts here has only encouraged me to get a second opinion. I don't have any other issues and don't itch very often. In fact itchiness usually happens after injections and not at other times. I have two smallish bald patches on top of head. Things were slow moving to begin with so I have no idea if the treatment is actually slowing things down more or not. Meanwhile, my gut has not enjoyed the hydroxy. Sorry to complain as I see others having harder journeys. It's just been a hard week trying to figure out what to do with so little info out there.

I have been told and read that there is no hair regrowth with LPP. The scarring prevents that.

I was recently diagnosed with LLP. Dermatologist started me on doxycycline and finasteride. Has anyone had success with this? Anyone know of alternative treatments that have helped? Thanks!

Has red light therapy helped? Thanks

I was finally able to see a specialist last month. The hair specialist wanted to put me on strong anti inflammatory meds however they can cause hives. My allergist recently diagnosed me with chronic hives...so strong anti inflammatory meds were ruled out for me. My allergist and the hair specialist decided to put me on Dupixent. I have had my first dose last week and have been told that all meds take about 4 months before you start to see results. Also, I have had two dermatologists tell me that my hair will not grow back in the LPP scarred areas on my scalp and I need to accept that.
Hope this info helps.

I have heard that red light therapy causes inflammation...which is bad for LPP. However, a hair surgeon has told me that red light therapy helps to make the hair stronger and possibly stimulate regrowth. So...I have tried it for several months. Not sure if it has made a difference or not.

I read where it calms inflammation. Who knows? I am going to try it. Thanks.

Thanks 🙁

I am currently on doxy and Clobetasol. I was able to change dermatologists who was going to cut my dosage of hydroxychloroquine if things still looked good at the year mark. However, shortly before that appointment my eye doctor discovered retina issues that were probably not caused by the drugs but dermatologist decided to play it safe and changed me to Doxy. So far so good about month in.

That said, other than not getting additional bald spots (as far as I can tell) I still can't confirm what has worked and what hasn't. I almost envy those who have had itching issues because at least you can tell if a treatment is working. But then my initial dermatologist was keen to triple up or quadruple up on medications.