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Occasional Contributor
Posts: 17
Registered: ‎02-19-2012

Re: A.M. Style Live Chat, 7:00, 2/20

 

Thank You for the lovely scarf suggestion.  

Occasional Contributor
Posts: 17
Registered: ‎02-19-2012

Re: A.M. Style Live Chat, 7:00, 2/20


@LTT1 wrote:

@Desert Lily @lolakimono @twinny70 @Coach Lover @DancinQueen 

 

I'm hoping to get an appointment...

 

I lose hair too and it was diagnosed as Lichen planopilaris. I see the derm regularly for it.

Last year, when I was newly diagnosed, née hair would grow in at hairline and then be lost then grow in again!

 

When it is Jan/Feb historically, that is when my immune system seems to be struggling the most.

 

I'm going to run the ciovid shot by him before I get it!

 

Love the look of those jeans!


Hello,

Thank you for posting your Lihen Planopiliaris hair loss issues.  I am hoping since reading your story I can now ask my doctor about my hair loss pertaining to LP.  I started getting ittle reddish purple patches on my skin in the arm area in late 2019 to 2020.  Saw my derm and he gave me a cream to put on it.  But most recently when I started seeing massive hair loss in the drain evertime I washed my hair, I went back to the derm and he ran blood test for Thyroid and other diseases and found nothing.  He chalked it up to me getting older.  I am only in my mid 50's.  So then I went to regular doctor for more blood work and everything came up negative.

Thank God I saw your post today, bec now I will make an appt for my derm doc and ask him if my hair loss is related to my LP disease.  I might get another derm doc bec why didn't he make the connection of hair loss with the LP?

Honored Contributor
Posts: 54,410
Registered: ‎03-29-2012

Re: A.M. Style Live Chat, 7:00, 2/20

@SoX 

My bad- it was black & silver-under $30.

Image 1 - Vintage-Multistrand-Silver-Tone-Black-Lava-Heishi-Beaded-Necklace

 

I thought you might like this one too-

Image 1 - MULTI-STRAND-BROWN-amp-CREAM-COLOR-HEISHI-LUCITE-BEADED-STATEMENT-NECKLACE-36-034

$12.50

Esteemed Contributor
Posts: 6,598
Registered: ‎03-10-2010

Re: A.M. Style Live Chat, 7:00, 2/20


@lolakimono wrote:

@SoX 

My bad- it was black & silver-under $30.

Image 1 - Vintage-Multistrand-Silver-Tone-Black-Lava-Heishi-Beaded-Necklace

 

I thought you might like this one too-

Image 1 - MULTI-STRAND-BROWN-amp-CREAM-COLOR-HEISHI-LUCITE-BEADED-STATEMENT-NECKLACE-36-034

$12.50


Oh my gosh, @lolakimono !  I actually own that second necklace, which had a matching bracelet that I also own.  It must be over 20 years old and still looks like new.  The ornamental piece that looks like a large bead actually unscrews in the middle to facilitate taking it on and off.  The bracelet is a stretchy type and the elastic is still good after all these years.  This was a very inexpensive piece that turned out to be a really good buy.

"Breathe in, breathe out, move on." Jimmy Buffett
Honored Contributor
Posts: 34,519
Registered: ‎03-09-2010

Re: A.M. Style Live Chat, 7:00, 2/20

@Bird mama

You must be in excellent shape!
~Have a Kind Heart, Fierce Mind, Brave Spirit~
Honored Contributor
Posts: 34,519
Registered: ‎03-09-2010

Re: A.M. Style Live Chat, 7:00, 2/20

[ Edited ]

@Coach Lover 


This is one of my favorite subjects, which, when I get one, I study with intense INTENSITY LOL!

 

So, my Derm was sitting across the room. I said "I have a little "spot" on my leg. (It's LP or an LPP variant)  Every "spot" starts out as a keratinized hair follicle and that's exactly what it feels like.

 

So I pulled my pant leg up for him to see the spot (embarrassing).

 

When he looked, he said "hmmm". Then I had one on my arm, and I rolled my sleeve up... I have scars on my arm or really it's more like little circles of white areas loss of pigment.

 

So he is sitting over there looking like he is deep in thought...his eyes narrowed and he said "let me look at something." He came over to where I was sitting and he looked at my frontal hairline. He then told the nurse "write down LIchen Planopilaris on her notes." 

said "we need to schedule a biopsy, but that is what it is".

and told me he needed blood tests/results on me

 

Facebook has an excellent (private) group for this diagnosis called "Let's Put Out The Fire - - Lichen planopilaris".

 

The members there agree...doctors and dermatologists alike do not know how to diagnose and treat this disease.

 

The fact that you also have the purple bumps elsewhere (purple is nearly a diagnosis for Lichen) is significant and for most doctors significantly plays into the diagnosis, so be sure to stress that you have been seen for this. It will help in the diagnosis/treatment.

They will probably start you on many different meds because there are many choices. Also, I have found Borax (yes Borax) keeps the condition at bay for me. I put it in my bath and some people make it into a rinse and say it helps their hair.

 

Steroids, I would like to caution you, will help in the now, but you will most likely find that you will have a rebound after the designated time is over. Still, if steroids can prevent losing your hair...

 

Another very important thing to do is to change your diet (AIP diet). Your body is fighting a defective T cell immune response....you don't want it to be also fighting you over gluten/dairy/fast foods.

 

My blood tests included vitamin D levels/thyroid/ferritin/zinc and others. My ferritin is/was low. The dermatologist assured me that when my iron levels came up, I would regrow hair. The scarred follicles won't regrow, but mine have quite a bit.

 

I will leave this here for you and if you have more questions please ask. I have spent two years learning about this condition...patients agree...doctors do not know as much as we would like in order to diagnose and treat this!

 

Bedt of luck! Do not let your medical team disregard you on this!

~Have a Kind Heart, Fierce Mind, Brave Spirit~
Occasional Contributor
Posts: 17
Registered: ‎02-19-2012

Re: A.M. Style Live Chat, 7:00, 2/20

Hello, I just saw your response.  Thank You!

So my original Derm diagnosed me with Lichen Planus and saw the little purple red patch on my arm and wrist.  He gave me a cortisone cream and it helped. I don't get flare ups in the summer only the dead of winter.

Most recently everytime I wash my hair, hair falls out after I use conditioner.  Been switching up shampoo and conditioner and now using Tweak by Nature by Dennis he used to make the Orjon products which I always loved.  I love the shampoo and conditioner and can see less hair loss.  Today I used a different shampoo by Dennis that he had on TSV and the conditioner is too thick. So sending that back.

On to the hair loss:  I have another appointment with a different Derm my girlfriend recommended bec the other Derm never told me my hair loss was related to Lichen Planus.  Maybe he forgot that I have this disease.  I don't know but he could have read my file and seen that a year ago he diagnosed me with LP.

I will see what this new Derm says regarding my hair loss and if it has to due with me having Lichen Planus on skin.

Diet: I am a healthy eater, don't eat fast food.  I cook alot, however don't know if I can give up my skim plus milk in my morning coffee.  What about Splenda?  Should I not put it in my coffee? I do not use sugar.   I have also been very stressed out with work.  My husband said that could be the reason for the hair loss.

My blood work came back from GP Doctor and he said he tested thryoid, lupus, aniema and all are good.  Vitamin D is low so he gave me a prescription and I take D once a week.  Also GYN did blood work all is normal.  That is what is so confusing.  Blood work comes back normal so why hair loss when I wash hair.  No bald spots, thank god!  hair is thinner than it was 2-3 years ago.  No scalp marks on head no patches on head thats whats so wierd about this.

Thanks again for your reply and also want to ask what is AIP Diet you mention?

Honored Contributor
Posts: 34,519
Registered: ‎03-09-2010

Re: A.M. Style Live Chat, 7:00, 2/20

[ Edited ]

@Coach Lover 

 

Thank you for your reply! I am just seeing this today.

 

AIP diet:

 

EVERYTHING WITHIN THE SMALL RED CIRCLE IS OK

9735A8A1-626D-4EBE-A9F7-9B5BE8D85B70.jpeg

 

Amy Meyers, MD uses stevia in the PaleoProtein, which is my main food every day.

I realize that many would not think this is healthy, but it works for me and is AIP approved, fills me up, and helps me with my weight.

 

Many have said that their doctor would not give them a diagnosis without a biopsy.  My dermatologist did a small punch biopsy and that made my confirmed diagnosis.

My DD has an allergy to balsam of Peru that is apparently in many things including toothpaste and conditioner. This might be a rare allergy.

 

Some in that private FB group have various recommendations for hair products...my dermatologist told me that I also have Seborrheic dermatitis and said to use Selsun blue and or head and shoulders, which I did every day for one year.

 

Many in that FB group also have SEBORRHEIC DERMATITIS. Some in thst group are rx'd Plaquenil or methotrexate for LPP which my dermatologists have also considered.

 

I also use Rogaine foam each day, but it is very drying. 

My new dermatologist thinks my hair is too dry causing it to look damaged. I have stopped using a flat iron every day.  Pittsburgh winter air is stripping my skin and hair.

 

She told me that my hair loss now is more "global" than at the front hairline (my frontal hairline does show scarring). Last visits my new dermatologist said she does not see inflammation at the hairline right now. I'm very hopeful that this means my condition is in remission.

 

She did say that this pattern now comes from stress. She encouraged me to use techniques for stress relief. She also administered a shot with kenalog- a steroid- to get me thru about 6 weeks (during holidays).

 

As I could predict, now that the shot is wearing off, the LP has returned with renewed vigor. 😏

But I'm dealing with it!

 

Good luck with your situation! I hope you get a diagnosis and some help!

 

~Have a Kind Heart, Fierce Mind, Brave Spirit~
Honored Contributor
Posts: 34,519
Registered: ‎03-09-2010

Re: A.M. Style Live Chat, 7:00, 2/20

@Coach Lover 

 

My experience with dairy has been that a little won't hurt, and I think sometimes a too strict diet is depressing...and who wants that? LOL

 

When I completely cut out gluten and stayed strictly AIP, I did much better. Also, my reactions to specific things in my diet became more pronounced and easier to recognize.

 

I have been gluten and dairy-free for over one year.

~Have a Kind Heart, Fierce Mind, Brave Spirit~
Occasional Contributor
Posts: 17
Registered: ‎02-19-2012

Re: A.M. Style Live Chat, 7:00, 2/20

Hello and thank you for the information!  Sounds like you know your body and have done alot of research.  My symptoms are not as severe as yours.  If you looked at me in person you would never know my hair is thinning and that I have a small patch on my hand where my thumb is located.

My appointment is on 18th of March with the Dermatologist and I will see what he says.

Another question, is the only way to mesg here through reply to thread?  I am on the purseforum and I am able to direct mesg someone whenever I need information on anything.  Didn't see that option on here, seems like everyone can read my situation.

 

I am grateful that you were able to share your experience with LIchen Planus and diets that have helped you.  I need to find a way to get rid of stress that is job related.

You have very good advice.  You should write a column for wellness Smiley Happy