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Comment by Caro UK on April 5, 2013 at 4:54pm

Hi everyone, Ive been keeping up to date with recent posts. All very informative. Glad to say I have not had any stomach irritation since I changed from the generic hydroxychloroquine to Planquenil.
Hi Ellen, interesting that you have Rosacea and eczema, both of which I suffer from. I also have Vitiligo.
I can't style my hair properly any more so I've bought a wig and I had it cut yesterday. Then I wore it to the shops. I was very nervous and kept checking myself whenever I came across a mirror! No-one gave me any funny looks so I guess it looked OK. It was very windy out and I was really worried it would blow off! Managed to get back to the car without misshap! Fed up with spending ages trying to pencil in my eyebrows to make them look natural. As luck would have it, there is someone local to me who is an expert in semi-permanent makeup so I'm going to take the plunge and have eyebrow micropigmentation. I've booked an appointment for next week.

Comment by PamW San Diego, CA, USA on April 5, 2013 at 12:59pm

Just saw my specialist at UCSD, who reiterated that plaquenil is the safest of the immunosuppressants to use for the treatment of the disease. He said that most people who take it, stabilize over time. He does not see people have remission for the disease. He did say to be careful with the clobetasol to be checked for hair thinning. He did see inflammation on my scalp and said there could be inflammation under the skin as well. He also thought using minoxidyl for women was worth a try. He did say that studies have shown that the women's strength was just as effective as the men's strength but had less of the side effects that can occur from this product. He took pics again and I have to go back in 3 months, so I guess things are status quo for me. He also wants me to have my eyes checked because I am on the Plaquenil. I asked about the excimer laser and he said that it has helped people with other skin diseases such as vitiligo, but he said it wouldn't help me. he also said that he expects that someone will find a cure in the next ten years, and that he was going to try to find out if anyone is working on a topical cream with the active ingredients that are in Actos. He still worries about prescribing Actos because it can cause congestive heart failure and because there is no proof that it works. He said stress doesn't help us and stressing over our hair, obviously, isn't good. He said that sometimes support groups are good and sometimes it can make things worse because they can make us more aware and worried. He suggests keeping busy and trying to put it on the back burner. I apologize for the length of this post, but I know we all look forward to hearing news.

Comment by Debs on April 4, 2013 at 3:21am

SAMMI - as you have been seeing Dr Harries for 2 years you are well ahead of the rest of us in the UK that having only been seeing him for a few months... Can I please ask you to post what treatment you have received ? and any side effects and whether it worked ? Any info we share with each other really helps us to make informed decisions about what we are prepared to try. Thanks you.

Comment by AC from CA, USA on April 3, 2013 at 7:39pm

Hi Pam,

I'm waiting to see Dr. Mirmirani, who works for Kaiser Permanente in their northern California medical offices. She is located at their Vallejo facility. She currently has a huge backlog of Kaiser patient referrals...I'm told it may take her office four to six months to schedule my appointment. I've been waiting since January. :(

Aimee (AC)

Comment by PamW San Diego, CA, USA on April 3, 2013 at 7:30pm

Hi, Paula. I am not a doctor (only a grade school teacher), but my understanding is that we all have LPP. FFA is a type of LPP in that the hair loss follows a pattern. FFA is characterized by hair loss at the front hair line, temple and nape of neck. It is a band of hair loss and is common in post menopausal women. Women also lose their eyebrows and other body hair (underarm, forearms and legs). I have had two sisters take prednisone and I know from their experience, it can cause hair loss, so if you feel that you are losing a lot of hair it could be because of that drug. You might want to get back to your doctor and tell them what you are experiencing. The drug, Plaquenil, that I am on, takes almost 6 months before people can tell if it is working or not. In the meantime, my doctor prescribed an antibiotic, doxycycline, that helps to reduce inflammation, which also helps with skin conditions like rosacea. My scalp is still inflammed and I have been taking plaquenil for 8 months. I am going to my specialist on Friday, and I am going to ask if there is something else out there for me.

Celia, don't apologize for having a bad day. We all know how you feel.

Ellen, where is Dr. M in California?

Comment by Paula uk on April 3, 2013 at 5:33pm

Hi ladies,
In need of your help and advice.Having been diagnosed with LLP and hairloss consistent with FFA in mid March.
Please forgive my ignorance...

Is LLP and FFA the same thing?
Does LLP cause FFA?

So I'm just realising for me my hairloss is :- along my front hairline and above my ears and also at the back of my head and on the crown!

I think after my diagnosis I concentrated on FFA and assumed my hairloss would be more frontal hairline loss.I think I was in shock and denial.
I'm on Prednisolone ,Elocon scalp lotion and Etrivex daily shampoo.
If anything I feel my hairloss has quickened since I am on medication - is this a common feeling or is it that I'm totally tuned in now so I notice the slightest change?
In your experiences is it almost certain that I will need wig / hairpiece with these conditions? What kind of timeframe?
I have more burning ,itching and inflammation now than I did previously.
My hair is now very dry as I have wash it everyday with Etrivex ,I shampoo and condition it one day and then just conditioner the next.
I also was diagnosed with Roscrea since January so is that also part of this disease, although not prescribed anything...

Fed up.x

Comment by CJ- Christine from Ottawa Canada on April 3, 2013 at 3:09pm

Liz,
I think the inflammation approach is significant. I have psoriasis on my feet ( inflammatory condition) Lichen sclerosis and Atrophy ( inflammatory condition), digestive issues like IBS ( maybe inflammatory .. who knows) and some version of dermatitis (- also inflammatory). I have done two months of gluten free to see if it might help..no such luck. but I am convinced that there must be a connection to all these inflammatory conditions roaming around in my body. that said, Plaquenil didn't work for me - just gave me chronic stomach upset.

Comment by AC from CA, USA on April 3, 2013 at 1:27pm

Ellen,

I am to see Dr. Mirmirani for treatment consultation sometime soon...am waiting for an opening in her schedule. My biopsy showed both LPP and FFA. My disease progression has included intense itching, flaking, dryness snd the doll hair syndrome. My eyebrows, under attack, started sticking straight out in weird directions or doing weird curly things.

I'm interested in the research that toxic lipids are causing the inflammation. Can't wait to see Dr. Mirmirani!

Comment by Liz on April 3, 2013 at 12:39pm

I have dry hair. Very fine but lots of it (before this) and it's always been dry. Now the hair that I have left is drier than ever and is feels very different to how it was before. It's thinner, whispy and sticks up and out like a dolls hair.
Does anyone has other areas of thier body that are inflammed in some way? I have quite red skin on my feet which I've had for years. When I take the Doxycyline the redness goes. I also have Gall stones which cause inflamation.
Also why is it that it's only the front of the hair and sides that we lose. What is different about the hair that grows there?
And lastly :o) When are we going to arrnge a meeting?
x

Comment by ElleMN, USA on April 3, 2013 at 10:47am

Yes, Alice, I do remember that happening. I remember sitting at my desk at work and noticing a lot of flaking on my shoulders and thinking--what is gong on? Why so much dandruff all of a sudden? At the time I had a newborn at home and was severely sleep deprived and just attributed it to that.

Caro, I wanted to mention that at my last derm appt I was diagnosed with Rosacea...what next? I do have a history of skin disorders, acne, eczema, psoriasis...but Rosacea is new.

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