Comment

Comment by Kath UK on July 31, 2013 at 9:54am

Hi Liz - good luck with your new wig. I had a lot of fun (unexpectedly!) when I went to buy my first hair piece and it's given me a new look and a real morale boost. I hope you enjoy the experience as much as I did.

Comment by Liz on July 31, 2013 at 8:16am

Hi All. I shall look up Dr Weils Debs. I bought the Anti inflammatory diet for dummies book which is a good, interesting read.
This morning I received a letter from Dr Harries. I had written to him saying that I wont be going to see him again at the moment and he wrote back and said that if I want to see him again in the future he would be happy to see me and also that it had been nice to meet me back in March. He is such a lovely man.
Next Friday I am going to buy a wig from Tredco, I'm quite excited! xx

Comment by Debs on July 31, 2013 at 6:48am

Dietary changes:

I did the Joe Cross 5 day reboot juicing fast about 3 weeks ago. bought a juicer and spent 5 days juicing 5 times a day (mostly veggies) since then I have been following Dr Weils anti-inflammatory diet (if you google him you can see his diet pyramid) I have virtually eliminated all processed foods also gluten and diary (I have cheese just a couple of times a week in a salad) I eat healthily anyway so this is not a huge change for me but I feel better for these changes. My skin (on my face) looks good on this, I can't of course say it is stopping the FFA but I feel that it is helping my body by not eating foods that cause inflammation. I would like for the medical communities to look at dietary effects on autoimmunity in more detail. If anyone has a derm that has advice in this area I would love to know.

Wigs - I had a day out in London yesterday with a friend, I wore a wig and I am thankfully now so used to it I did not give it a second thought. I think it has taken 7 months of wearing wigs to fully feel at home in them and they now feel like a normal part of my routine. They say that 'time heals' and this condition definately takes time to be able to find coping strategies and work your way through your emtions. For all you ladies recently diagnosed that are still reeling in shock, it does get better you need to be kind to yourselves and give it time. I am now 18 months on from being diagnosed and am now starting to feel like my old self. Have a good day everyone. XXX

Comment by AC from CA, USA on July 31, 2013 at 2:09am

I take 500 mg Turmeric, 100 mg Resveratrol (new med for me...will be dosing up to 500 mg quite soon),500 mg Bromelain, 470 mg Aloe Vera, 400-2000 Vitamin E, 450 mg Licorice root, 550 mg Ginger, 475 mg Neem leaves, 1000 mg Fish Oil.

Also tried Holy Basil, but it made me feel strange, so I dropped it.

Comment by PJ - MN, USA on July 31, 2013 at 12:28am

What are the doses for Turmeric, ginger and Vit D that people are taking?

Comment by Annie on July 30, 2013 at 4:41pm

Alice, I have been taking Spironolactone for about 6 years to control my oily skin. I don't know if it helps to grow hair, but my doctor thinks it may be the reason my FFA hasn't been as aggressive as some. I'm still taking it along with Plaquenil.

Comment by Alice on July 30, 2013 at 2:29pm

Has anyone tried spironolactone? It's an oral BP med with anti-androgen properties. I took it for a while and sprouted lots of new hair on top. Stopped taking it due to loe BP but new hair is still there.

Comment by christiekd on July 30, 2013 at 2:08pm

Debs, I use the rogaine last after clobetesol or protopic.

Carol, I'm glad you discovered Smart Brow. I can even go swimming with it on and it doesn't come off. And sometimes, if I don't take it off at night, it stays on the next day too.

My derm is very aggressive with this disease. If this was not working for me, he told me he has other drugs that we can try. Although he says the other drugs have a lot more side effects than what I am currently on. I don't know what the other drugs are, but I am really hoping I don't find out. I'm hoping I will continue to have success with what I am currently on.

Comment by Debs on July 28, 2013 at 2:23pm

Christie thanks for your treatment regime. Can I ask please do you apply the rogaine before or after the clobetasol ? XXX

Comment by Annie on July 26, 2013 at 4:32pm

I use the men's strength Rogaine per my doctor's advice. He also said that the foam version only needs to be applied once a day after the first 6 weeks of use. You need to be prepared for extra shedding from the 2nd through 6th week when you first start using it. This a good sign that the new growth process is taking place. My hair loss probably doubled during that time.

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