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Can someone please help me understand whether my condition is Alopecia
My doctor currently says it’s Lichen Planopilaris (LPP), but I’m confused because my symptoms have changed over the years.
When my hair loss first started, I had clean, white round patches with no redness, itching at all.
After some time, those spots turned blackish possibly due to some herbal medicine oils on hair, and I was treated for DLE (Discoid Lupus) with topical and oral steroid but got no result.
I didn’t get treatment for many years, and now after about 10 years, I restarted treatment.
The patches are no longer blackish — now they look light pink/red.
My doctor is treating me for LPP using a topical JAK inhibitor.
I can see some very fine vellus hairs growing but the growth is extremely patchy and thin.
It has been 4 months on the topical JAK, but I’m not seeing much improvement or regrowth.
I’m really confused about the diagnosis.
Is this typical for LPP? Could it still be Alopecia Areata because of the clean round spots in the beginning?
If anyone has similar experience or knowledge, please guide me on what I should do next, biopsy, second opinion, different treatment, etc.
Thank you.
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Sorry you are going through this, I know it can feel devastating.
I was diagnosed with LPP back in 2020. Mine was triggered by a medication I was given for osteoporosis.
My symptoms were burning and pain in the scalp and diffuse hair loss. I was losing tons of hair all over my scalp, no patches.
I know someone with alopecia areata, and yes, their hair loss was in patches.
Although the dermatologist knew right away what was going on, she still did a biopsy, and that confirmed the diagnosis.
Hope all works out for you, good luck.
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1 Reaction@twinklestar18. I love your online name!! Welcome to Mayo Clinic Connect . I’m glad you found this site.
Can you tell us why you had no treatment for 10 years? What did they tell you the first time you went for a diagnosis?
https://connect.mayoclinic.org/discussion/medication-for-alopecea-a/ Here is a link to one of the discussions on Alopecia. I’m not totally sure if all the members are still current. Just ask a question on the page and you’ll soon find out.
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1 ReactionIf you know for sure you have had a proper diagnosis of Alopecia, maybe a new medication for it would be helpful. I have Hashimoto’s and Hypothyroidism and was also loosing my hair and I began taking Perque Brand vitamins for Hair, Skin and Nails and my hair is growing back like weeds! Have you had a Thyroid Panel run ever? You could possible have Hypothyroidism as well. This causes hair loss as well.
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2 ReactionsIf you had a biopsy that was read as LPP it is likely
the same condition. If you are uncertain you could ask
your dermatologist to retest you.
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1 Reaction@becsbuddy I went for treatment two times and both time they treated for DLE due to blacking and reddish color of spots. But I discontinued treatment because of some personal reasons. Now, I am getting it treated again and now my doctor is treating for LPE but now after seeing a bit of growth now he is saying it can be something else like schleroderma as I have some atrophy in my patches. I don't know what everyone is doing. He is saying he won't do biopsy as my hair is growing biopsy is necessary only for active disease and mine is burnt out
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2 Reactions@lkirnbauer I have my thyroid profile done and I got diagnosed with hashimoto but now it is under control and my current TSH is 2.9.
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1 ReactionI have PBC and am losing a lot of hair. I'm taking ursodial which supposedly causes that. I've been using rosemary and Moroccan oils since last week. We'll see what happens. I feel for you though..... my self esteem is heading south quick. My hair was always fine/thin... but having NOTHING to work with sucks plus the more I try to brush it, style it & cover it up... I lose more!!