I have an idea and would like your help

Hello all. You may have read my posts before. I'm Ellen and I've been working with my acupuncturist using 7 star needles and chinese herbs with a good deal of success. Even so, it hasn't stopped me from looking for more help. I have a theory and I'd like your help in trying to see if I'm right. The upside is that it's non invasive and at worst it will help your overall health. At best, who knows, perhaps an answer. I've spoken with a number of LPP sufferers and the common thread I've heard is that we all seem to be chronically dehydrated, long term. It's certainly true for me. My theory is that because this often comes after menopause and that menopause causes your body to overheat that the delicate balance of hydration (or lack of it) that is barely adequate during normal times causes an intolerable situation. Now now no one knows if this is viral, bacterial, auto immune or what, exactly, but they do know that heat makes it worse. Dehydration makes it worse. Spicey foods that cause heat can make it worse. Emotional stress that causes us to heat up, makes it worse. I propose that we try to put this fire out in the most obvious way. So far, I've been trying to drink 10 or 11 8oz glasses a day. For me, this has been a very difficult thing to do. It takes a lot of concentration and I've enlisted the help of friends and family to remind me. I saw a decrease of shedding and itching within days. I dropped back down to my normal 0 to 4 glasses one day and I immediately saw an increase in symptoms. Went right back up to 10 and had relief. I'll admit here that I also am very careful with my diet. I don't eat spicey foods and I have very little animal fat in my diet.

So what I'm asking is if some of you would like to join me in attempting this simple possibility. Can we put the fire out?! You would have to make it a priority to tell if it were working. Are you game? Everyone out there willing to flood their bodies with chemicals and their side effects. Are you game? To you all who say your desperate for an answer will you join me in this attempt? Please let me know, first of all, if chronic dehydration has been a problem for you. Let's see what the common thread is. There just isn't going to be a silver bullet here. We have to do the research ourselves. Let's just try to find out if this could be a common problem. Ellen

Hair piece and other things

A quick summary of my situation. My first time with Lichen Planopilaris was in 2002....it lasted 1 year. Fast forward to 2009 and it is back. The first time I used topical treatments and I experience minimal hair loss...mostly near my ears and back of my head. Currently, I'm doing cortisone, topical treatments, and Plaquinal (sp). I have greater head loss and it is on the top of my head so it is becoming harder to hide.

I've had two meltdowns and so I decided to get a hair piece. Yes, human hair is expensive...especially virgin Russian hair. The hair salon I went to told me they run between 1800-3200. Yikes!!

I couldn't take the meltdowns so I ordered a transitional hair piece hand made with clips and using virgin Russian hair.....$2,200.

I am now going to this new local hair loss salon for cuts, coloring, etc. Not happy, but a least I feel in control.

ETTA

Re: Hair piece and other things

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Originally posted by ETTAA quick summary of my situation. My first time with Lichen Planopilaris was in 2002....it lasted 1 year. Fast forward to 2009 and it is back. The first time I used topical treatments and I experience minimal hair loss...mostly near my ears and back of my head. Currently, I'm doing cortisone, topical treatments, and Plaquinal (sp). I have greater head loss and it is on the top of my head so it is becoming harder to hide.

I've had two meltdowns and so I decided to get a hair piece. Yes, human hair is expensive...especially virgin Russian hair. The hair salon I went to told me they run between 1800-3200. Yikes!!

I couldn't take the meltdowns so I ordered a transitional hair piece hand made with clips and using virgin Russian hair.....$2,200.

I am now going to this new local hair loss salon for cuts, coloring, etc. Not happy, but a least I feel in control.

ETTA

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Hair piece

I am new at this too. I ordered my custom hair piece 2 weeks ago. It will take 6 weeks to be made, so I expect to have it for the Holidays.

A transitional hair piece is basically something that fits on the top of your head. It has 4 clips that clip into your hair, but what it also has is several rectangular holes (about 3/4 inch long & 1/2 in wide that you pull your own existing hair through to blend with the hair piece. I chose the transitional piece rather than a partial prostheses because I still have a hairline and it seemed lighter....just felt more comfortable about wearing it. I have short hair so it shouldn't be hard to pull my real hair through the holes. If you have long hair it might be a problem.

Human hair is suppose to be the best for looking the most natural. From what I have researched there are several different types of human hair (Asian, Indian, European). Typically Asian and Indian hair is processes (I am not sure why) and non processed European hair is considered the best. Most European hair comes from Russia. It is more maintenance than "cyber" hair. I was told if you do not wear it 24/7 (take it off at bedtime) and are very careful with it you might get 2-3 years out of the piece. Altogether an expensive investment. I was told I should buy a "cyber" piece to use for swimming, riding in a convertible, exercising, etc. I will take one step at a time.

I did not go to a "wig store", I found a local hair salon that specializes in hair loss. They do "custom" wigs/pieces, "out of the box" wigs, and laser light procedures, etc.

Etta

Facebook

Hi Everyone
I just open a facebook page for patient with LPP if you like to share your info,experiences and any related subject and you are a patient of LPP please search for " LPP Let's put out the fire " to join the group...
I am also a patient with LPP for the last 8 years.
Thanks
Hatcho

Protopic
Does anybody know how best to wash this out of hair? I have to use it at night but find shampoos will not get rid of it so my hair is greasy and dull and so looks even thinner than usual. I've tried Head & Shoulders- still not getting rid of the protopic residue.
Thanks
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Abberley

LPP

Hi Melissa33,

I was quite pleased to hear that you are involved in the Actos clinical trial. I read an article about Actos a while back, and also have been communicating with someone else that was using Actos but had no success. It is exciting to hear that Actos is working for you. I have been trying to get my doctor to let me try it but he wont. He said he needs to see reports. I gave him a report in my last monthly visit but it still wasn't enough. The male patient mentioned in the report also had great success with Actos. I will attempt one more time with my doctor & if he doesn't let me try it I will go to another doctor. It is still undecided if I have LPP, discoid lupus or both. I go to a teaching facility and you would think that between 12 doctors they could make a final decision. Right now I'm on plaquenil, sorriatane, accutane & steroid injections and still get bumps and redness. Some bumps are like pimples and others are hard and white. All this is due to the famous drug Enbrel. Yup, the one that messes with your immune system. Things got better when I stopped the Enbrel but one year later things started back up. I can never drink enough fluids but part of that is due to my hereditary disease & also the sorriatane & accutane. I find that spicy foods and stress set things off. I don't have itching, burning or pain like others mention. I only have tenderness when I touch the bumps. What were your symptoms prior to Actos? I can't believe you saw results within 1 1/2 months. That is amazing considering how long it takes for plaquenil to start working. If possible, can you share the name of your specialist? Have you seen any new hair growth or is it too soon? Have you seen changes due to your diet? Any info you can provide is appreciated. Please keep posting on your condition because you give hope to the rest of us.

Facebook

Hi Everyone
I just open a facebook page for patient with LPP if you like to share your info,experiences and any related subject and you are a patient of LPP please search for " LPP Let's put out the fire " to join the group...
I am also a patient with LPP for the last 8 years.
Thanks
Hatcho

LPP

Hi Melissa33,

Who is your specialist, and what daily dose of actos do you take. My deem okayed me to try it but I have to see the endocrinologist first for input. The derm doesn't wan me to go on it if it will counter act with my other med. You said the redness etc is gone but still have itching. What does your doctor think about the itching when the other symptoms are gone? Any input you can share will be greatly appreciated.

Plaquenil

Has anyone ever had any success with Plaquenil for their LPP?