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Comment by Jules UK on February 25, 2013 at 6:35am

Celia, that sounds a lovely idea! I'm happy to travel to London and will drive anywhere. X

Comment by Jules UK on February 25, 2013 at 6:18am

Yes, of course. Is it helping her? When I had my first bout of FFA, but didn't know what it was, I had Fucidin for the inflammation. FFA the stopped for about 8 years. I'll ask about that too. By the way, do you know if there's a wig that you can sleep in?

Comment by Debs on February 25, 2013 at 6:07am

Jules, can you ask Dr Harries:
GRISEOFULVIN - antifungal is being used by Michelle in the USA with MINOCYCLINE ( minocycline is a tetracycline antibiotic like the doxycycline that is being used) what does he think of trying the antifungal?? I was so busy asking about gluten when I saw him last week I forgot to ask about the antifungal drug.

Comment by Jules UK on February 25, 2013 at 5:41am

Celia, I know dieting sounds a bit "kooky" but it seems that meds don't work and I'm willing to give it a try whilst I've still got some fringe to save! The fasting came from an edition of Horizon and shows how you can restrict production of a potentially harmful growth hormone. The Dr presenting was so convinced by the science, he converted to it too.
Www.bbc.co.uk/news/health/19112549
Interestingly, the same hormone was mentioned on the paleo diet website. I may be too weak willed but it looks a healthy way of eating. I'll miss cheese though!
Have a wonderful time - relax! And good luck with that finger. And I hope you don't have to wait too long for your next appt, this is the trouble with the NHS sometimes. X

Comment by Jules UK on February 25, 2013 at 3:59am

Celia, from what I've read here plus my own experience, I do agree with you. But it goes against the grain somewhat to just accept this without some struggle. I've decided against steroid injections if offered and still undecided about plaquenil. I'm going to try the paleo diet starting today (well, willpower permitting) in addition to the alternate day fasting. If I don't try, I'll never know whether it just might have helped.

Comment by Jules UK on February 24, 2013 at 3:11pm

My next appt with Dr H is this Friday. So any further questions, do let me know. I'm toying with the idea of trying the paleo diet for a month. It's worth a try....
Has anyone taking doxycycline noticed it helping at all? I find it gives me heartburn in spite of taking it with milk and lots of water. And hairloss continues anyway. Hey ho! X

Comment by Simone NJ USA on February 24, 2013 at 12:14pm

Hi Debs:

Would you say that it makes little sense investing in a hairpiece as there is now at to know how far the hairloss will progress in each person. I like the idea of the hairpiece, however, I just don't know how much hair I will lose..?

Comment by PamW San Diego, CA, USA on February 24, 2013 at 11:39am

I went to Patti's shop, which is in San Diego. She is amazing.

Comment by Debs on February 24, 2013 at 11:18am

Liz, I have my own hair (well, minus the bit missing from the front) and my wigs stay on just fine, you don't need to shave your head to wear a wig - in fact you can use small bobby pins a couple at the front and back to anchor the wig in place. Your head is inside it, it isn't sitting on top of your head like a hat does, inside the wig and the back there are 2 straps that you can tighten and if you want to feel extra secure you can buy wig tape for about £5.00 on the internet and just put about 1 inch at the front of the wig to stick it down, it pulls off easily and the wig tape normally stays stuck on your head, you can pull it off or soak it off with rubbing alcohol (£2.00 for a big bottle on Ebay). A wig will not blow off in the wind or fall off if you turn your head upside down in a yoga class... Check out Patti's Pearls videos online, she is a lady that has survived cancer and has a wig salon she does these amazing videos of how to put wear wigs she is full of life and they are really fun and inspiring. If you do decide to get a wig rememeber you don't have to wear it 24/7, I have not worn mine since Friday, I went to gym and Tesco today just wearing a wide headband but having a wig gives you a few more options.

Comment by Alice on February 24, 2013 at 9:12am

For those of you who, like me, have a lot of scalp tenderness and itching, I think I have stumbled upon something that helps - Oolong Tea. I read about it helping people w/ eczema, so figured it was worth a try. I've been drinking 2 cups a day and my scalp feels decidedly better. Could be coincidence or placebo effect but, whatever it is, I'll take it. My scalp feels better than it has in months. I'm also taking turmeric capsules for inflammation. I'd be interested to see if it helps anyone else.

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