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New Diagnosis: Lichen Planopilaris; Now What?

Discussion in 'Tell Your Story' started by Thinning, Apr 1, 2019.

  1. Thinning

    Thinning New Member

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    hi all. I posted my story below as:
    36, Probably Androgenic Alopecia? Probably Mirena Trigger
    Tags: Add Tags

    As the title implies, I was sure I had androgenic alopecia, set off my going on and off Mirena Iud. I had multiple blood tests, pelvic ultrasound as well as hormone levels for PCOS, and thyroid tests, vitamin levels...everything came back great, not just okay but great, except for some low vitamin d.

    First dermatologist gave me finesterade, second gave me spironolactane, I took neither as I’m still thinking about having kids. third actually took some time and recommended blood tests, but when they all came back normal, said “have we talked about rogaine?”

    I said I didn’t want to start it or anything like finasteride or Spironolactone unless I’d had a scalp biopsy to be sure, so we did a scalp biopsy.

    I just got the results today: lichen planopilaris, an autoimmune disorder (well, probably; they’re quite sure) — basically your body attacks the hair follicles and it’s scarring, The hair loss is permanent.

    Sorry for tmi, but I’ve also been having chronic vaginal inflammation, which I am now sure is a similar autoimmune reaction. Anti inflammatory cream and vitamin d have at least for now helped with that (in remission of the vaginal inflammation, at least for right now).

    In a way, it’s a relief to have an answer. I’d considered lichen, but I was so focused on androgenic alopecia it was still a shock (I guess I can have both...).

    Maybe it’s pathetic but I’m taking the day off work to process everything. I’m feeling

    1) relief at having a diagnosis
    2) grief at the thought there is officially no chance my old hair or a semblance of it is coming back, even with rogaine (I even bought a bottle...guess I can return it!)
    3) fear that I have the frontal fibrosing form, and will lose my eyebrows (I have some thinning in my eyebrows) and hairline totally
    4) proud that I insisted on a scalp biopsy and went through several dermatologists and a lot of tests that wouldn’t have happened if I hadn’t done my research
    5) pain that I can’t treat it, only stabilize it
    6) both fear and a sense of “fuck it” about the future. There’s something that’s both horrifying and weirdly freeing about knowing it’s permanent and scarring. Like shaving it all off and getting a wig feels somewhat appealing for the first time. Although I guess I have the same horrible “sitting around and waiting for it to get worse or stabilize” situation as I did before. But at least now I’m not clinging to hope or wondering if I’m delusional or other emotional cycling.
    7) it’s possible that going on the iud did set this off, but I guess it’s a relief to lay down the burden of feeling like it’s all my fault this happened for going on the iud. No one really knows what it causes it; it’s more common in women and 30-50 so...I guess I feel in my heart the hormonal changes of the iud did kick this off, as that’s when symptoms started...but it’s imposisble to know for sure. I feel like I’m letting some of the self-blame go.

    Dermatologist wants me to use clobestal (topical steroid) every day for a month and then come see her.

    Don’t know what the future holds, just wanted to share and say: insist on a scalp biopsy! Reading about someone else who had Lichen and found out after insisting on a biopsy is part of what made me insist on one. It can seem like a waste if you don’t have something like this, but I’m sooooo glad I didn’t plunge into Spironolactone and rogaine, which wouldn’t have helped and may have made things worse. Wouldn’t have known without the biopsy!
     
  2. Georgina

    Georgina Established Member

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    Oh man, LP is hard. I’m so sorry.
     
  3. LindaLou

    LindaLou New Member

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    Was diagnosed with Frontal Fibrosing Alopecia about 18 months ago. In some articles, FFA is linked to lichen planopilaris. Surprized yur doctor didn't give you that exact diagnosis. Am in sixties, but have had many issues that may have links to autoimmunity; acne, eye blepharitis, pre-diabetic, SIBO, IBS-D, etc. If you don't mind, will make some suggestions, as am of the same mind-set as you. You took a day off from work to process the situation. Get that totally. Kudos to you! Some things am doing, or have discovered:

    Diet is related to so much that goes on in our bodies. Perhaps try the Autoimmune Protocol, or look into the Plant Paradox by Dr. Gundry. I have SIBO, from so many years of taking antibiotics to cure my acne. (They didn't) Three rounds of Accutane too. Now, I try to follow a low FODMAPS diet, as well as advice from the two above eating plans, plus other tweeks. It is trial and error. Basically, cutting out excess sugars, too many gluten products, only certain fruits, eating enough protein, etc. Again, everyone is unique, so you may want to keep a food journal that records how your body reacts to foods. And keep in mind, what you ate yesterday can have an impact the following day. One book I read said to think of your gut as a 'bucket'. What may be on the bottom can get stirred up by what you put on top of it. And speaking of excess of anything...

    Stress is another big problem we people face with skin and hair issues. You probably are already doing things to help with that such as praying, exercises, meditation, anything to relax the mind and body. Love the "Calm" app, taking deep breathes through the day, my prayers, etc.

    Hair: I have been using Rogaine for years, as hair thinned years ago when major stresses began (divorce, relocation). About a year and a half ago, saw a new derm in the practice, as went in for my annual skin check (have had minor skin cancer, MOHRS surgery) and to get refill on RetinA (using since 20's, so skin texture is pretty good) He asked me about my hairline and eyebrows. Hmm? So said that am menopausal, and he said no, you have FFA. Put me on a topical steroid to use 3x a week. Now am so sensitive to steroids, knew that wasn't for me. Researched liked crazy. So my protocol now:

    My own combo scalp treatment:

    In a bottle with dropper, use equal portions Jojoba Oil, Peppermint Oil, and Rosemary Oil. Sometimes use a bit more Jojoba Oil, as in beginning solution can sting a bit. In the PM before bed, use 1/4 dropper in front, all around hairline. Also put on my eyebrows. It has taken about three months, but even my husband said hair looks fuller, and bangs not as wispy. Will use another 1/2 dropper for rest of scalp.

    Am still using Rogaine in the AM. Put on after brush teeth, use in frontal area, and all over. One dropper full.

    Brush hair for at least 50 strokes at night. Had gotten away from that. Try remember to do another 50 in the AM. Also shampooing my hair more often. With the newer, straight styles, had gotten away from washing every other night. Maybe you are already cleansing daily or every other day. Think as the 'dry shampoos' have become so popular, women are not keeping their scalps in best condition. Not good.

    Will massage Tea Tree Oil (use 365 brands Whole Foods) into scalp before shampooing, if I remember. Sometimes use that in place of my JPR oil concoction at night. Shake out a few drops from bottle (Not in a dropper, darn). The scent is strong, but have come to enjoy. As an aside, also use the Tea Tree Oil around my nose, eyebrows, and ears. As you keep researching, you may come across some articles about mites that live in our eyes and ears. And that they are connected to the lichen. Yes, it is gross.

    My scalp is not as red as before, have fine hairs growing back in, all around healthier. I do occasionally use the topical steroid, but NOT as doctor recommend. Maybe once a week, if notice scalp little pink.

    Also, am religious about skincare. Double wash face at night, never go to bed with makeup, use drugstore brands and some high-end here and there. But keep skin clean, not too much makeup.

    Let me know if you have any questions. Know this was long, but FFA is not something women want to have. Doctor pointed out that women have been getting this forever. He said look at old paintings of Queen Elizabeth 1. He said think about close female relatives. Yes, he was right. But did the research, and found there's a lot of info out there to help holistically. Good luck and blessings.
     
    TinaM1968 likes this.
  4. Thinning

    Thinning New Member

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    Thanks for the support, and LindaLou, thank you so much for the detailed regime.

    I just got the diagnosis of LP over the phone, but yeah when I talk to the derm I except to get a FFA diagnosis (it's a form of lichen) as I do have eyebrow thinning and thinning at temples (not obvious receding hairline yet, but lots of "lonely hairs" where there was once a thicker fringe, so....)

    I have a clobestal prescription; I'm not using it everyday as advised, as I am scared of steroids but I'm using it every other day and it has helped get rid of the scalp redness pretty much entirely. From what I've read online, overuse can lead to skin thinning and scabbing so I want to be careful.

    The one time I tried essential oils directly on my scalp/eyebrows I broke out and it made my scalp crazy red. I am trying mixing in peppermint oil to shampoo, which was has been more of a success, or mixing oil into coconut oil or milk. Tea tree oil does seem good for killing gross stuff :)

    I am considering diet as well :)

    Hey, in Elizabeth I's time people actually SHAVED BACK their hairlines because it was fashionable to have a receding hairline/big forehead!

    Thanks again for the support. I'm struggling pretty hard and doing my best to stay positive
     

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