Lichen Planopilaris

[englandr1]

My current dermatologist has been treating my Lichen Planopilaris of the scalp for a few years now but it seems worse than ever now.  Do you have any suggestions on a treatment that may help?  I've tried Planquenil, C-Quinacrine, antibiotics, clobetasol topical, and for past month or so, have been on Cellcept.  I'm getting very desperate as I'm permanently losing hair still (and now it seems to be almost daily).  
Also (if you happen to know of a Dr., or know where I can search to find a Dr.) I'm thinking maybe I need a specialist in that particular disease (if appropriate, doesn't even have to be a dermatologist).  I am looking for a new dr. who, preferably, specializes in lichen planopilaris, in either Detroit area (I'll be here for the next few months) or in Chattanooga, TN area (I'll be moving there in January).    Thank you.

[sunbeltqueen]

In response to looking for a dermatologist, I would suggest finding one who does hair transplants.  My derm-hair transplant specialist is Dr. Mark Waldman.  He is affiliated with both the American Board and the International Board of Hair Restoration Surgeons.  He made sure I was diagnosed correctly before going straight to transplant.  Now we know, transplant would not have worked.  It may in a year or so, if we can get this under control and it goes into remission.

[sunbeltqueen]

I do not have any updates.  I'm a retired research coordinator in oncology.  The two places to look for anything going on in research in the US are PubMedg.gov and clinicaltrials.gov.  Nothing on the horizon.  It's a rare condition so therefore, there's no incentive for Pharma to try to come up with a drug.  There's no $$$ in it.  I guess I'll get some Boswellia tomorrow at my healthfood store. I had intralesional injections of steroids today.  Doc wanted to give me tetracycle, but I'm allergic to it.  So, he said we may go to Plaquenil next it no response from injections.

[sunbeltqueen]

I received diagnosis today of LPP with frontal fibrosing alopecia.  I also have Hashimoto's thyroiditis.  So, my body is killing my thyroid and my hair follicles.  I was a clinical research coordinator in oncology for 30 years. Thank you for the information.  I will try the Boswellia supplement.  Any additional information you learned would be appreciated.

[Ciriak]

Dear englandr1,

I am suffering too from the same problem.

I had a biopsy done back in 2007 which confirmed the LLP.
Then I started with cortisone and after Plaquenil etc. etc.

Then after a couple of years I stopped Plaquenil, and used only some foam or topical cream.

Now I am about to re-start Plaquenil.

However I have not decided. I am trying to search for some new treatment, to contact doctors who have done some related research and all… I am thinking homeopathy too although till now I was not positive to this either.

Have you tried anything, do you have any updates since TheLightSeeker  replied?

Thanks.

[englandr1]

Thank you so much

[TheLightSeeker]

Hi englandr1.

Well, I'm sorry about your condition, which seems to have no "medical"
cure, but I understand your need for some type of treatment through a more specialized doctor.
Chances are that there aren't any experts in this field, due to the lack of enough research to find a cure stemming from the lack of funding ,as it is considered a "cosmetic" disease and also Lichen Planopilaris being a rather rare condition, which does not help either.

Here's some info that might help (from my own research):
This is interesting for sufferers of conditions where inflammation and
auto-immunity are involved or suspected, as in LPP

Boswellia is a herb that is a great anti-inflammatory and immmunomodulator.

It inhibits lipoxigenase enzymes, thus impairing the synthesis of Leukotrienes (inflammatory molecules).

Here's the better news:  TNF-a (Tumor Necrosis Factor-Alpha) a nasty group of chemical inflammatory agents.
Well, TNF-a causes also connective tissue breakdown. And guess what?
Boswellia can inhibit this destructive process.  

Ref: PubMed.
Laboratory of Molecular Medicine, Department of Surgery, The Ohio State University Medical Center, Columbus, OH 43210, USA.
"Regulation of vascular responses to inflammation: inducible matrix metalloproteinase-3 expression in human microvascular endothelial cells is sensitive to antiinflammatory Boswellia."

Note: The full effect may take a few weeks of supplementation.
One must ensure highest quality of standardised Boswellia serrata extract, containing about 40% of Boswellia acids. There seem to be no established guidelines for dosage, but about 500mg x2 daily with food, is consistent with most practitioners' recommendations.

Please look into this as I feel, is worthwhile and with no known side effects-this has been used in Ayurvedic Medicine for 1000s of years, with no issues, as an anti-inflammatory.

AOR has a nanoAVAILABLE Boswellia supplement, if you wish to check it out.I think it has greater bio-avalibility.
Taking it with meals that contain fats (best is coconut oil-heated OK-, or olive oil but not heated!)
The effectiveness gets boosted up to 700% (not a typo) when taken with fats!
Note:I have no affiliation with AOR.

Chronic stress, specially hidden stress, could be either a contributing causative factor, or a trigger.
You may want to look into having an "Adrenal Stress Profile" in regards to this, but I would recommend you do the Adrenal Questionnaire first,
as a screening test. if interested let me know and I'll send it to you.

C-Quinacrine is a mainly antiprotozoal drug.
Look into the numerous medicinal benefits of virgin coconut oil orally and topical application,which is also a good antiprotozoal AND antiviral agent
(there's a suspicion of possible viral infectious involvement in LPP) and isalso antimicrobial and antifungal. (it's antifungal properties may counter the damaging effects of the antibiotics, hopefully minimizing any yeast overgrowth/candida possibility.

Lichen planopilaris (LPP) has been found to be due to a mutation in a gene that regulates the sebaceous gland synthesis and degradation of lipids/oils. The defective gene is called PPAR gamma. A FDA approved drug for diabetes mellitus (Actos) is targeted to the defective gene.
More research is needed.
Relevant information appeared in the Journal of Investigative  Dermatol. 2009 May; 129(5):1243-57 and the article is titled:
"Hair follicle stem cell-specific PPAR gamma deletion causes scarring alopecia."

Karnik P, Tekeste Z, McCormick TS, Gilliam AC, Price VH, Cooper KD, Mirmirani P: J Invest Dermatol. 2009 May; 129(5):1243-57

You may want to search under PMID: 19052558, for the abstract.
For the full article you may have to purchase an individual subscription
with a free trial.

Feel free to message me directly. This is a complex condition and there may be more suspect underlying factors and triggers.

Please note that this is NOT intended as a substitute for medical advice.

Best wishes.
Niko