Recently Diagnosed with Lichen Planopilaris (scalp)
Posted , 71 users are following.
Hello all. I'm a 30 year old male hoping to gain some valuable knowledge and insight from this community, as it's been a major struggle dealing with this disorder.
I've been fighting with the following symptons on my scalp for ~2 years now: red, inflammed skin, no flakes or scales, mild itching but nothing terrible, and noticeable hairloss in the affected areas. The areas affected are my frontal third, two thirds, crown and also my right side above my ear. There are still areas of my scalp that are unaffected and retain a proper neutral color. I previoulsy have never had this issue on my scalp before and there are no signs of it anywhere else on my body.
After visiting 3 different dermatologist, I finally had a scalp biopsy performed. The results were that I had lichen planopilaris of the scalp. My previous two dermatologist were treating it as possibly seborrheic dermatitis. I never quire agreed with this though as I did not have the typical signs of SD: dandruff, flakes, scale, etc--just persistent redness and inflammation. Even so, I tried every known dandruff shampoo and active ingredient available on the market to no avail. In fact, these generally just exacerbated the condition.
So far I'm been put on the following meds:
--Minocycline (bacterial)
--Clobetasol (corticosteroid)
--Fluconazole (Fungal)
--and my most recent derm wants me to start on immunusuppresants CellCept and Plaquenil
In terms of natural remedies, I've tried applying pure aloe veral gel, coconut oil, avocado oil, apple cidar vinegar...None of these really have done anything for me, sadly.
The Clobetasol topical liquid does midly help. It seems to improve the areas least affected and brings my skin tone back to almost normalcy, but has little affect on the more pronounced zones. I also have reservations on being stuck using a steroid for my entire life for two reasons: 1. it's detrimental to the skin (thinning). 2. It's not treating the cause but seemingly only the symptom.
As of right now, I'm working on making some dietary changes (no dairy) and more of a "paleo diet" regemin.
I have not yet tried the immunos as I've very hesitant to go down that route. My current derm states I need a baseline eye exam before starting up on these drugs. Quite intimidating.
I've heard a number of people report very good progress from holistic methods, such as Oriental medicine coupled with acupunture. Wondering if anyone can comment on this?
I'm very much so at an impasse with this skin disorder. It has come out of nowhere and totally taken control of my scalp's health, and, well, my entire life to a large degree. It's extremely draining and does not allow you to focus on other parts of your day-to-day living; Instead, you're looking for "the next treatment of the week to try out on your scalp" hoping that you can finally get some relief.
Thank you to those who read my post and looked at my photos attached. I value any input user's here might provide to help me fight this terrible skin disease off.
1 like, 126 replies
Dan123466 Coligion
Posted
hi all ... I need a help I dont know what to do .. I have been diagnosed with LPP. I did 5 biopsy and I used whatever you can image. now I'm using doxycycline and the bald spot still increasing. I'm depressed.. thinking about suicide. If I cannot kill this disease I will kill everything on me..
please someone can help me?
I will start hydroxychloroquine is there anything else that might help? please please..
thank you
Patient_mod3 Dan123466
Posted
Hi Dan123466
We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologise for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.
If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.
Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.
If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.
If you are based outside of the UK.
The Samaritans is a UK based charity, but they also have suggestions for how you can access help in other countries.
Please have a look at this page https://www.befrienders.org/directory
Patient
drm00953 Dan123466
Posted
Hi Dan,
I noticed someone has given you good advice about reaching out to the Samaritan's. Please reach out & get some
help. My brother committed suicide. His name was Dan. There are people out there who can help you. Take good care of yourself.
Dan123466 drm00953
Posted
Thank you very much for the reply. I need to find a way to stop this disease. Does anyone has any comment to help me? Shampoo? Pills? Injections? I did for sometime something called autohemo therapy but didnt work.
Please any idea? Thanks, Dan
Dan123466 Patient_mod3
Posted
Thank you very much for the reply. I need to find a way to stop this disease. Does anyone has any comment to help me? Shampoo? Pills? Injections? I did for sometime something called autohemo therapy but didnt work.
Please any idea? Thanks, Dan
rhoda30391 Dan123466
Posted
Biotin shampoo i also take a Biotin supplement daily . i see a dermatologist every six months now and usually get a cortisone injection in scalp.
antonio37631 Coligion
Posted
Hi Coligion
nice to meet you. how are you?
so in theory I have your same disease i mean lichen planopilaris from 4 months and it's terrible how's it changed my life. at the moment I'm using clobetasol spray and getting doxycycline 100mg but i dont see any improvements.
listen did you had a (Plaquenil -- hydroxychloroquine) treatment?
waiting for your answer,I offer
best regards
Antonio
natalia10836 Coligion
Posted
Hello,
I'm a 32 year old female diagnosed with LPP last october after suffering hair loss in patches since last january (2019.) I was originally prescribed dermovate ointment which I hated as it made my hair slick with grease, and then a month of steroid pills which seemed to work for a while... however now it seems to be back with a vengeance. I'm currently in lockdown with 4 other people including my husband, and we take it in turn to do the cooking every night, so having a drastic change in diet will be really hard. I was fortunate enough to get my doctor to post me some hydroxychloroquine pills in the midst of this awful pandemic... has anyone tried these and had any success?
I was also wondering if anyone has tried to dye their hair while having it (I'm aware that sounds really stupid but i was naturally blonde throughout most of my life until it started getting darker in my 20's and therefore I used to highlight the roots... I only ask because the bald patches are much less noticeable with blonde hair as my scalp is so pale!) It's depressing me that the roots of my hair look mousy-brown and just highlight the bald patches (which are now all over my head!)
As I said, I have yet to change my diet but will do my best to cut out gluten, sugar & dairy (besides greek yoghurt from what I've read?) We tend to eat a lot of tomatoes and cook with garlic & onions too though so I think they will be really hard to cut out, unless of course I just start making myself meals separate to everyone else 😦 Also we all love wine, more than ever in this situation! But I've read that actually if i switch to red wine over white that might be ok?
Does anyone have any advice on what shampoo & conditioner might be good? I try to use natural products but maybe there's a brand that has been proven to help. One thing for sure I know does not help in sauna heat! (I'm half Finnish so grew up having them as often as I could, but now it just causes the patches to go red.) Also sunlight seems to do the same thing 😦
I've also just ordered some tumeric pills & probiotic pills after reading previous comments. Any other help or advice would be greatly appreciated. Thank you!!
frances50886 Coligion
Edited
When I finally went to a doctor and was diagnosed with Lichen Planopilaris I was prescribed steroidal medication which I hated, as it seemed to make things worse for me. Since then its been a series of hit and misses.
I've tried many things, there's been improvement, but no absolute cure.
On thing I've noticed is that the wrong foods will cause a almost uncontrollable back lash of itching and serious hair fall out. Sugar is a big problem as well as breads rice and pasta. So diets that include carbs is a problem. It causes inflammation.
Dyeing my hair is a huge issue, my hair starts falling out within days. I've needed to change shampoo and conditions repeatedly even the natural ones are a problem. So I try to use gentler hair colorant's without peroxide and avoid scalp contact. I do the same with conditioners.
These are some other things that help. When itching starts I apply straight Aloe Vera Gel to the spots and what a relief. I've read that Aloe Vera promoted hair growth as well.
I take Biotin , Zinc, Tumeric, Vitimin B, Omega fish oils and eat probiotic yogurt daily. But even with supplements and all mentioned if I slide backwards with my diet its all for nothing.
I've started using Bentonite clay to wash my hair, but the jury is still out.
I always do my own research on anything new and cross check sources. Hope this helps.
sandy3737 frances50886
Posted
Thank you Frances for all the information. I've tried everything the dermatologist prescribed except the medication. And none of it helped. I do have a problem with giving up sugar and carbs. I will keep doing my best.
Thanks again.
rhoda30391 Coligion
Posted
May I suggest that you go to the national Institute of health ( NIH) Website and read about this condition. It is an auto immune disease. It is incurable at this time . I was diagnosed about three years ago. At that time I had a lot of scaly spots in the front of my head as well as little bumps little pimples. The area was read just as you describe it and it certainly does HI was diagnosed about three years ago. At that time I had a lot of scaly spots in the front of my head as well as little bumps little pimples. The area was read just as you describe it and it certainly does H from time to time. from time to time . My doctor did a biopsy, and the same result as you got for LPP. my dermatologist gave me a lotion which I was told to rub into the affected area on my scalp twice a day. In addition to that I’m bought myself some biotin shampoo because I was told that biotin is good for hair loss. Frankly I don’t see a difference. The best thing you can do is not rub your scalp. sometimes the area where the LPP is gets better and sometimes it gets worse. Please understand that these are my experiences and I am in no way suggesting you do anything that I told to you in this paragraph. It is not fungal and it is not bacterial. To repeat what I told you earlier, ple go to the national Institute of health website and read all about this condition. I wish you the best of health. The name of the lotion that my dermatologist prescribed, is called Betamethasone Dipropionate lotion USP ". 0.05%
marina0309 Coligion
Posted
Hi all,
I just picked up your discussion and have been dealing with this for over a year, caucasion, 48 year old woman with more severe outbreaks than remission on my scalp and just last 2 weeks noted patches on my arms. I am wondering if people have had medical or dental implants that have been implicated in the autoimmune cascade?
jacques62449 Coligion
Edited
Can any of you please specify which vitamin supplements you have taken prior to having been diagnosed with LPP? In my case the supplements were Vitamin A (retinylacetate) 10000 IU/day, Vitamin D3 1000 IU/day and Vitamin C 1000 mg/day.
I have a suspicion that at least 1 of these has caused the disease.
olivia55740 Coligion
Posted
hi!
I have this too! I am a 30 yr old women, I have a few bald patches which hugely affects my self confidence & have outbreaks of a very itchy inflammed scalp so I feel your pain. I got diagnosed about 4 years ago & I hoped by now it would have subsided - I have read that after some time it "burns out". I have tried various shampoos / ointments etc & yes some do ease the pain. I got offered oral drugs but when they asked me to do an eye test prior to taking them & every 6 months during treatment it freaked me out, so I decided not to. Nothing that I know of will bring back my hair that I have lost , which is the most upsetting!
hang in there!
sher87034 Coligion
Posted
LP and LPP are not the same - one is skin, other hair. I was diagnosed with Lichen Planapilaris which is also known as Frontal Fibrosing Alopecia (FFA) in Nov 2020. I have lost some hair from temple to temple across front hairline. I see my Derm every 2 months. There is no cure, just hopes for it to slow down. I began noticing the loss above my temples early 2020. I was prescribed Betamethosone cream 5 days per week on the hairline and Tacrolimus ointment for my eyebrows. the eyebrows are pretty scarce but I'm blonde and never had thick brows. Two months ago I started taking Doxycycline, 2 pills a day. My Derm wanted me to begin the pills months ago but I was waiting until I had answers on another issue since the Doxy could have side effects similar to what the other issue was presenting. Since I started the Doxy I haven't had any side effects. Overall, I believe the hairloss has slowed. My Derm saw small red dots with magnification at my last appointment so after using the Doxy consistently, it will be good to see what he says in August.