I have Lichen Planopilaris

I should have mentioned that none of the women I met who took those drugs and had success have been through cancer like I have. I also read about the LPP/hypothyroid link and had my doctor run a full thyroid panel, but that does not seem to be an issue for me. One more thing I learned about was the iRestore device for low level laser therapy - two women I talked to have used it with some success, and the company offers a 1 year money back guarantee if you don't see any improvement. So I might try it, but can't use it right now while I'm on the doxycycline because of the sun sensitivity. Ah well. Good luck with your doctor this week.

I have been diagnosed with LPP (with biopsy) more than two years. (Although I was found with Lichen Planus on my gum 15 years ago, which didn't have any symptom and was not treated). The LPP started with itching scalp and I lost a lot of hair in a few months. However, I was able to control the itching with Fluocinonide 0.05% solution. The hair loss was mainly around temples, behind ears as well as the top of my head. After a year, the top of my head seemed in remission. However, the area above my neck was still active and itching. My dermatologist is advising me to take Mycophenolate Mofetil. After reading all about its enormous long-list of side effects, I went to another derm for second opinion, who advises me to take daily 200mg Hydroxychloroquine and 100mg Doxycycline Hyclate. Right now I am waiting for my retinal toxicity screen baseline test, before the medication.
I am very reluctant to start either Mycophenolate Mofetil or Hydroxychloroquine. I am wondering if I don't take any oral medication, and just use topical medication for itching, will I eventually lose all my hair? Will the condition spread? Of course I hate to lose my hair, but is it worth to gamble my eyesight for hair?

I am in the same boat and was wondering if you stopped your oral meds. If you stopped, did your hair loss progress?

I was reading online that a low inflammation diet might be helpful?
Any insight?

I have all types of Lichen Planus and cutting sugar out of my diet has helped for my oral LP but the rest of my body is burning and in pain. My feet are hot and feel like they are being attacked with pick axes. My eyesight is touch and go and severe dry eye. My left ear has developed tinnitus and feels like someone is trying to stuff a tennis ball in it. I e tried all types of antidepressants and antipsychotics but had effects with them all so how do I get rid of this overwhelming pain? I agreed to try gabapentin again and immediately my hands became stiff and I couldn’t even turn the water faucet. The tips of all my fingers are red and have gone from feeling like constantly having paper cuts to razor blades on all finger tips. Any light burns my eyes. ER and Urgent Care turned me away saying they don’t help with pain. I see my pain mgt dr this am and I hope he can provide some relief?

My LP has now moved to my private mucosal membranes and doctors don’t know what to do. I need relief from pain so I can get myself to specialists to help me get this under control. What type of doctor helps with LP throughout body? I also developed severe rosacea moving from my beet red face down further and further my chest. I have so much cream and drops to put in my eyes I can’t see most of the day Do I see a rheumatologist? Is there such a thing as an autoimmune specialist?

Dermatology and rheumatology.
Also there is a cream that works on those delicate places. Gynecology too?

After my retinal toxicity test, I have discussed with my ophthalmologist about the side effect of Hydroxycholoquine. She said the chance of losing eye sight is very low (less than 5%) withing 5 years of taking Hydroxycholoquine. However, once it happens, the eye blindness is irreversible. I think my hair loss has slowed (maybe just wishful thinking), and I have decided not to take any oral medication for now. My scalp is still itching from time to time. I am using Fluocinonide (Topical solution) 0.05% when need it. It is very effective to stop the itching.

Hello,
I was diagnosed with lichen planopilaris, not Lichen Planus (they are different) put on 200mg Hydroxychloroquine & clobetasol for 2 years with no improvement. Switched Drs. and started Doxycycline Monhydrae and n-acetyl l-cysteine supplements along with Low Light Therapy and have not had the blistering and pain. Everyone is different so keep trying and working with the specialists. Also have been trying to eat a plant-based diet.

I have pyoderma gangrenosum- 2 yrs and too many treatments & Drs to list but man is it frustrating! Good luck.