I have Lichen Planopilaris

Posted by shooter @shooter, Mar 25, 2016

I have Lichen Planopilaris. Could the use of Red Lead Paint, Zinc Chromate and Acetone cause this issue of Lichen Planopilaris? I was in the US Coast Guard and these toxic metals were chemicals were used on the bottoms of boats and marker Buoys.

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it is frustrating, be healthy and take care.

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Profile picture for balancedco @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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Is there another term for a specialist in functional medicine?

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Profile picture for bustrbrwn22 @bustrbrwn22

Is there another term for a specialist in functional medicine?

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I believe sometimes functional medicine and integrative medicine are used interchangeably. There are several articles on the internet that help explain the similarities and differences. Here's one example
- What’s The Difference Between Functional & Integrative Medicine? https://www.balancedwellbeinghealthcare.com/whats-the-difference-between-functional-integrative-medicine/

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Profile picture for Ethan McConkey, Moderator @ethanmcconkey

Hi @kherman and welcome to Connect!

I wanted to introduce you to Connect members @beryl @lima and @loli as they may be able to offer support and what they've learned in their experiences with lichen planopilaris.

@kherman, when were you diagnosed with lichen planopilaris? How has it been treated thus far?

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I was diagnosed on 4/12/22 and prescribed Betamethasone Dipropiate ointment. I am frightted about it. I have RA Hashitomo's thyroiditis, sjorgren's. syndrome, eczema, nodular prutigo, and had psoriasis.

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Profile picture for balancedco @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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I’m
Not sure how to start a new comment thread

Was just diagnosed with LPP - is using hair dye a problem? Thx

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I was just diagnosed with LPP is using hair dye a problem? Thanks

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Profile picture for maralina @maralina

I’m
Not sure how to start a new comment thread

Was just diagnosed with LPP - is using hair dye a problem? Thx

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Hi @maralina - you want to avoid anything that will irritate or inflame your scalp. I was diagnosed with LPP back in October, 2023. I have had two rounds of cortisone shots in my scalp, use a red light dome cap 2x a week, gone on a low histamine diet, started acupuncture once a week, use minoxidil 5% liquid once a day and a steroid liquid 2x a day. I have quite a bit of new hair coming in and my doctor is very pleased with my progress. The low histamine diet has helped significantly with reducing the inflammation and itching. I did notice a new patch of scaling on a front section of my scalp...which is very frustrating. I may go back to the doctor to ask them to give me a low dose steroid shot in that spot to try and get it to stop. Other than that, I don't have any other solution. I am going to try tai chi soon to see if that helps with stress. At the end of June I have my first appt with the hair loss clinic at Stanford. Hoping they can provide me with other effective options to stop the progression.
Hope this information helps.

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I have been reading various posts and am finding it interesting that several people have irregular thyroid tests as well as LP. Does anyone know if there is a connection to the L P and irregular test results of thyroid? My thyroid tests show I have hyperthyroidism BUT all my symptoms are those of hypothyroidism. I made an appointment with an endocrinologist but it is going to take months to get in to see him. Thoughts?

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I have Lichen Planus and Lichen Planopilaris. I was diagnosed six months ago.
I also have a relatively rare form of lymphoma but the two are not connected.
I use a temporary hair dye and my doctor says it is safe, but I still have concerns and I have considered going grey if it helps the LPP subside.
I wondered about the plaquenil? Have any of you had success with it?
I know that the hair loss is permanent - has anyone had any success with OTC shampoos for hair loss like ROUTINE?
Thanks for the responses.

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Profile picture for virginiae @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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I have both LPP and FFA. I believe the former was triggered by Eliquis, which I no longer take, and the latter by lack of thyroid meds and stress. But I am stuck with both and no one seems to be able to help.

How did you find a support group? Dr. Donovan seems to be the most informed. I went to the doctor at Duke and got a laundry list. Has anyone tried the steroid injections in the scalp? I am trying to figure out why the dermatologist did not recommend this. I took Dutasteride and had some bad side effects and the breakouts increased.

Right now, I take black currant oil, Biotin and use Plated, the new exosome treatment from Mayo. Also I am trying rosemary oil in my shampoo.

Good luck!

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