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Comment by Celia on June 5, 2013 at 11:45am

May we have the recipe please Chris. Thanks !

Comment by chris for hair on June 5, 2013 at 11:40am

A little off topic, but Alice's comment about Tumeric and ginger is great. I have Lupus, another autoimmune condition, and had a very severe flair up over the past few months. Out of desperation I tried a "magic tonic" that a client gave me. It is lemons, garlic, ginger, turmeric and honey. It was amazing how much it calmed my inflammation and I now drink it every day for lunch. I am a huge skeptic and have tried many alternative natural treatments all with failing results. But this one really has made a difference.

Comment by Alice on June 5, 2013 at 8:59am

Welcome, Jane. It seems as though some of us have more trouble with scalp tenderness and itching than others. When mine was at its worst, I found a couple of things to be helpful: Nature's Gate Tea Tree Oil Calming Shampoo & Conditioner, as well as tea tree oil applied directly to the scalp (all available on Amazon). The oolong tea has also made a difference, I think. As I said earlier, I also take [generic] Plaquenil 2x/day and turmeric & ginger capsules daily. Elidel cream has helped my eyebrows grow back.

Comment by Plain Jane on June 5, 2013 at 7:51am

Rebecca, dapsone gel (brand name "Aczone") was developed for severe acne. It can be effective for rosacea, as well. Because it acts as an anti-inflammatory, my derm suggested I try it during LPP flares. Since it's prescribed off-label (my dx is FFA, not Acne) it is kind of expensive. And no, it has not stopped the hair loss. But my goal is to calm the inflammation, which (I hope) slows the destruction of the hair follicles. Once the scar tissue has formed, hair can never grow back... at least that's what the derm told me and what all the research indicates.

Comment by Celia on June 5, 2013 at 6:52am

Rebecca - how did you get on with your derm visit ? A little while ago you were upset with hair just disappearing - I hope you have found a bit of optimism and feel a bit more in control if that's possible. x

Comment by Celia on June 5, 2013 at 6:47am

That's good Sammi - I believe the thing with Reagaine is that you have to continue using it - don't stop - or any new hair disappears. Are you living in London, Sammi by any chance ? Have you been to any of the clinics there, that is if that's where you are. Are you on any medication right now - if so - any side effects ?

Comment by sammi on June 5, 2013 at 6:15am

Hi Cecelia regarding regaine, brand name Dr Harries asked me to try it had increased my growth of hair Ionly apply it was along the front band of the hairline, looking at photos my fringe looks fuller several months on! Sammi

Comment by Celia on June 5, 2013 at 2:31am

Liz - I use Turmeric Rhizome made by bio health.

Comment by Debs on June 5, 2013 at 2:07am

Jules, yes please do go ahead and be a spokesperson for us with Dr Harries, it will be very useful for him to get our input.

Tumeric - well, it was Dr Harries that mentioned to me that curcumin in tumeric was proven to help with other autoimmune conditions, he did not tell me to take supplements but of course any whiff of hope and I tend to jump on it. Liz, I take 2 tablets a day with food, I order mine online from a company in the UK, veganicity and the tablets are called 'tumeric extra', they also contain ginger (another anti-inflammatory, bromelain and piperine which are supposed to increase bio-availability).

Comment by Celia on June 4, 2013 at 5:51pm

Hello all and welcome to Jane. Sorry you too have been through the mill.
Thanks for the update Jules - good news for your daughter - keep using the pencil a bit longer - it will be worth it in the end to have the eyebrows done !
Kath - when I left M/C the last time after seeing Dr H - I came away with Quinoric - but not enough to last the 2 months before seeing him again - so I went to the GP who has the report from Dr H recommending hydroxy........I took it to the chemist and actually asked for Plaquenil which he gave me - no prob. I have found I get headaches since taking it so I'm afraid I don't always take 2 a day. I did notice that hairloss is listed as a side effect of both Plaquenil and Doxycycline. Puzzling. Each time I brush my hair especially at the front I have a lot of hair in the brush - awful ! Is anybody still using either 3M drops topically or minoxidil in any form on the scalp. It is expensive and I am not so sure it works anyway. I think it was Debs who recommended Plaquenil and not the other form of hydroxy....
I think my inflammation at the hairline is less now I am taking turmeric. I will try the oolong tea, Alice. Do we all feel that controlling the inflammation is controlling the disease - I am not so sure since some people have this condition but without the inflammation.
Jules - I think it would be great if you did the feedback to Dr H - perhaps we will find that this forum will really have a voice and hopefully some impact on accelerating understanding of this strange disease ! x

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