Anyone have lichen planopilaris?

diinIN · Post by **diinIN** » Thu Feb 02, 2006 6:57 am

I know this has been discussed before, but wanted to start a new post.

I've had this for about 2 years now. I read that 85% of cases clear up within 18 months. My dermie told me that mine won't clear up, and I shouldn't hope for it to go away.

I've been using Luxiq and Capex to try and control it, but it seems to be getting worse. Also, I think it might be traveling down my chest and back, altho the itching seems worse than it should be for the number of red dots I have.

This may be related to Systemic Lupus, as I'm being monitored for that and have had several symptoms. My bloodwork remains normal tho (except for the ANA, which was very high, and formerly, the anticardiolipin IgM).

I could use Plaquenil for this, but have this deep seated fear that if I do have lupus, the Plaquenil might not work for me (it doesn't work for everybody). At the same time, you can't use steroids forever.

And then I just found out that my rheumatologist isn't taking my insurance anymore, so now I'm really in a pickle. It's very hard to find a rheumy that knows diddly-squat about lupus. Still have my dermie, but she's no pro on lupus either.

Guess I'm just trying to find out what all my options are. Sorry so long!

Tricia · Post by **Tricia** » Thu Feb 02, 2006 8:16 am

How many dermatologists have you seen? If I were you, I'd check for one who has a special interest in treating lichen planopilaris and/or lupus. It's hard to find specialists within a specialized field, but well worth the effort.

Good luck, I hope someone else can post something useful for you.

diinIN · Post by **diinIN** » Thu Feb 02, 2006 8:40 am

I've only seen one dermie, and she's pretty lousy when it comes to lupus. She tried twice to tell me that if your double-stranded DNA is negative, you don't have lupus. I finally had to correct her (there is NO test that rules out lupus, and the ds-DNA isn't even positive in a majority of cases, I don't think, but if it IS positive, then it is diagnostic. So it's specific, but not sensitive).

Anyway, her intern that she was training in that day agreed with me. Since then (maybe she's reading up on things as she goes), she seems to have jumped on the autoimmune/possible lupus bandwagon, which is why she told me that this LPP is here to stay.

My problem is that I have to go with someone in my insurance, and I don't know any of them. I just pick a name from a list. I should call and ask questions.

Tricia · Post by **Tricia** » Thu Feb 02, 2006 10:56 am

I think you should check out Lupus resources in your area. They could probably recommend a doctor that takes your insurance.

Someone should be able to help you. It doesn't inspire confidence that your derm would tell you won't be able to get rid of the lichen planopilaris.

diinIN · Post by **diinIN** » Thu Feb 02, 2006 5:51 pm

I'll have to look into the lupus groups around here. It's a big city, so surely there is something.

The dermie used to tell me that LPP goes away on its own most of the time. Since she finally accepts that I've got autoimmune issues, and knows that it may be caused by lupus, that is why she changed her stand. I thought she was finally taking it seriously, and maybe actually doing some reading or something to find out what she should have known in the first place.

The worst part of dealing with something like lupus is the MD's who don't know enough about it. That's why I like my rheumy so much, and don't want to change.

Post by **HairLossFight.com** » Thu Feb 02, 2006 6:13 pm

I was diagnosed with it. But I want a second opinion. It seems to have stabilized a LOT since last year when I got diagnosed. Mostly confined to my thigh area and a little bit in the crown. I'm not using any medication for it as I was told it would most likely eventually "burn itself out". Whatever that means.

I hadn't heard that 85% of cases clear up within 18 months. I hope that's true.

Definitely think you should see another derm and the find the lupus support group. I hope you get both the LPP and the Lupus under control.

Regards,
Sam

diinIN · Post by **diinIN** » Thu Feb 02, 2006 6:41 pm

Sam wrote:I hadn't heard that 85% of cases clear up within 18 months. I hope that's true.

One of those places also said that 50% clear up within 6 months, but I found the 85% statistic in two places.

I've stuck with this dermie only because I was in the hands of a really good rheumy who was keeping track of what the dermie was doing. But that won't be the case anymore. I'm going to call insurance and see if they'll cover at least one more visit to the rheumy, and get her opinion on who I should see.