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I have Lichen Planopilaris

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

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@virginiae

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.

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Replies to "Hi and thanks for your reply. I was also prescribed doxycycline, along with a low dose..."

Thank you for your reply and for the resources. My dermatologist and functional doctor have told me that none of the drugs that my dermatologist recommended are even mildly safe because they can affect my eyesight, namely causing retinitis. The dermatologist wants me to go to a retina opthamologist for a baseline retina exam if I decide to go on plaquenil. I did read on the CARF website that LPP is linked to hypothyroidism. I've been on thyroid meds for years but results from last weeks blood draw shows that my thyroid, especially my thyroid antibodies, are out of range. I'm seeing my functional doc on Wednesday so maybe he will have some treatment advice. Thanks again.