Replies to Hi Virginiae. I too have been diagnosed with lichen planopilaris a few months ago. The dermatologist…

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Skin Health | Last Active: Mar 7 11:42am | Replies (28)

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@balancedco

Hi Virginiae. I too have been diagnosed with lichen planopilaris a few months ago. The dermatologist prescribed doxycycline but that caused blurring vision and I had to discontinue. She then suggested that I take plaquenil which is used as a treatment for malaria. I talked to several other doctors who say that this drug has a lot of side effects. I decided to put off taking it. The disease is causing hair loss with a red, painful and itchy scalp. It's also affecting the lymph nodes in my neck, which is very painful. Last year I took 4 rounds of antibiotics to cure a tooth infection and I was wondering if that may have weakened my body to the point where I got this disease. I saw a specialist in functional medicine who ordered a complete blood and dna stool panel. He said that it's possible with all the antibiotics and stress last year that I may have flipped a genetic switch that brought on this inflammatory disease. I'm waiting for the test results which include inflammatory markers in my blood and gut, toxins, bacteria, parasites, thyroid, iron, hormones, etc. Hopefully this will give us a path for treatment. I agree that this is very depressing....

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Replies to "Hi Virginiae. I too have been diagnosed with lichen planopilaris a few months ago. The dermatologist..."

virginiae | @virginiae | Aug 5, 2019

Hi and thanks for your reply. I was also prescribed doxycycline, along with a low dose of spironolactone as the derm thinks the hair loss on the top of my head is more androgenetic/AGA. The original LPP patches (diagnosed with biopsy) are on my temples & some behind my ears and seem to now be inactive (I'm praying). After about a month on the two meds my head is a lot less sore/pink and hair loss on top has slowed, so I am encouraged for now. This may or may not be due to the oral meds; there are so many factors here. A couple of things for you: 1) I signed up with CARF (www.carfintl.org) and soon after got an email about a support meeting in my area. I met 8 other women there, some with LPP and some had FFA. There were 3 with LPP who had it under control/"in remission" - two had taken Plaquenil and one had taken mycophenolate mofetil and they reported no bad side effects. If you are able to find any type of support group in your area, it helped me a lot to talk with other patients. 2) At the meeting I learned about Dr. Jeff Donovan - his website is donovanmedical.com if you haven't already found it. He is also on Instagram - donovanmedical. He knows as much or more than anyone I've found. Overall really frustrating since no doctor sees enough of this to have deep experience and there's no best practice for the oral meds - but Donovan does a good job laying out the meds and what's worked. Good luck and I hope some of these resources help.