Lichen Planopilaris...newly diagnosed

I was wondering what vitamins you were taking, I would like to try and see if they might help me.

My dermatologist prescribed ketoconazole shampoo and told me to alternate it with Head and Shoulders.

My dermatologist prescribed ketoconazole shampoo and told me to alternate it with Head and Shoulders shampoo.

I was diagnosed with Lichen Planopilaris in October of 2022. I already had a great deal of hair loss and the diagnosis was a surprise. My doctor thought my hair loss was due to my dematitis herpetiformis and celiac disease. I took Plaquinil and minoxidil for 6 months, plus a topical steroid. I have only lost more hair. I have stopped taking both drugs since it doesn't seem to be helping and I don't have much new hair growth.

I think I had LP for at least 2 years before it was diagnosed. I also have Hashimoto's disease - since 1984. The Celiac and DH were diagnosed in 2019. So many autoimmune diseases, it's very difficult to deal with.

I just came across the website and wanted to share my experience in case its helpful to anyone else. I understand how devastating it can be. I was diagnosed with undifferentiated connective tissue disorder as well as lichen planopilaris about 10 years ago. For the UCTD, my symptom was mostly joint pain that moved around sometimes all joints, the LP, my scalp felt like it was burning and I had some diffuse hair loss. I went on plaquenil (hydroxycholoroquine) for about 8 years, 200 mg a day. I had very good success with it and my symptoms went away. I was very consistent with my eye scans to ensure no damage. Unfortunately I recently learned I have some hearing loss and it is not possible to tell if it is related to toxicity of the medication, my lupus type of disease or aging though I am in my 50s and am not exposed to loud music or noise on a regular basis. If you decide to go on plaquenil, I recommend having a baseline hearing test as well as regular checkins. The more I read about long term plaquenil use the more concerned I grew and I decided to go off of it. It will take awhile to get out of my system but I am doing two things in the meantime that I believe are helping me. 1. Low dose naltrexone when my symptoms flare. It is an off label use of the medication and frustratingly there have not been a lot of studies. If you want to learn more about it, you will likely need to reach out to an alternative/functional medicine doctor. 2. I am following a plant based autoimmune diet that uses "hyper nutrition" to improve gut health which is supposedly where autoimmune and inflammation is rooted (along with genetics etc). I had been gluten free for 8 years and thought I had a healthy diet but ate plenty of meat, dairy and fish. This has been a MAJOR change to my life however I am thrilled that I am feeling really good. By nature I am a very skeptical person but I was desperate and couldn't think of a reason dark leafy greens (spinach, kale) and flax seed smoothies could do anything but help my health. I did not pay for any expensive program and have just been following the protocol on my own. Anyway, I hope this offers ideas and support to someone who needs it.

Hi,
I was recently diagnosed with LPP. I have alway had very thick, course, curly hair and it is very overwhelming all of a sudden to be losing my hair. I am trying to come to terms with the whole thing...some days are better than other days. I have had two rounds of the cortisone shots in my scalp. First round of shots gave me some relief but the second round isn't helping. I am trying to get an appt with a specialist in the SF Bay Area but that is very difficult. UCSF isn't accepting any appts and no waitlist. Trying to get appts with Stanford and UC Davis Hair Clinics.
In the meantime, open to all over the counter options and would welcome any suggestions from other LPP patients. Also, has anyone tried Dr. Gashee products?
Thank you.

I have been suffering with this condition for about 18 months. Lots of hair loss and red, sore inflamed scalp. I tried liquid steroids that didn’t help and refused any further treatment (oral steroids and malaria drugs) in search of a different approach. I have been having acupuncture for about 3 months, once a week. I have also completed a level 1 medical Qigong course l, and practice for half an hour every day and have managed to get the symptoms more under control. It’s much less angry and red and whilst I am still on this journey, I can say that I feel like this is working for me. Just wanted to let others know if they are looking for a more holistic option. The drugs I was offered treat the symptoms and not the cause. The problem is the immune system and I am working on fixing this rather than masking it! It’s been really awful and a lonely journey with many people not believing in what I was doing but I can say that this is working for for me and wanted to share with anyone else feeling helpless that is open to trying something different

I have also tried the Gashee products. I feel like they offer some relief but they aren’t practical for me. I have really blonde hair and the smell isn’t something you want to wear on your head in the daytime.. I would recommend the acupuncture and Qigong. It’s been a game changer for me…

Also avoid any seafood or anything from the ocean! Things like caffeine can also increase inflammation.

Thank you for your response. I will look into acupuncture and Qigong.
As for seafood, usually that reduces inflammation. Did a doctor tell you to avoid seafood?