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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.

Comment by Liz on February 24, 2013 at 5:37am

Morning :o) I've decided to buy a wig sometime soon. When I looked last time I was told that they fit more securely on a bald head but I don't want to shave my hair off. Has anyone who has a full head wig and has hair, had any problems with it staying in place? xx

Comment by Simone NJ USA on February 23, 2013 at 6:34pm

Bless your heart, Kath...thanks again and I'm sorry for the loss of your friends. Yes...several have shared their experiences with Plaquenil..I'm grateful for that..I will continue to take this to prayer and see where it leads me...thanks again...

Comment by Kath UK on February 23, 2013 at 4:55pm

If you're new to this, Simone, then I really sympathise. It is a shock, I know. But doctors are bound to come up with better and better treatments and I think you seem to be doing all the right things like healthy diet, exercise and lowering stress levels. I'm sure that helps - especially avoiding stress. And apparently FFA can stop at any moment. I can empathise about being scared to start the Planquenil - maybe one of the others in this group could tell you how they've got on with Planquenil.
It is confusing, I agree. All I can say is that I think being in a group like this can help - just knowing that you aren't the only one with this problem is comforting, I've found.

Comment by Susanne on February 23, 2013 at 4:54pm

Hi Donna and Kath - it's good to hear your thoughts and stories. Donna, yours makes me a bit more optimistic about taking a gluten-free approach. I'm glad you joined the group. Kath, it's always good to read something which puts this whole thing in perspective. I'm so sorry for the loss of your friends.

Comment by Simone NJ USA on February 23, 2013 at 4:35pm

Thanks Kath for sharing your thoughts. I've still new to this all. Having it for at 1 1/2 years or so I think and just recently diagnosed with FFA. The progression for me has increased in the past 2 1/2 months. However, I haven't had any activity in the past 2 weeks. It's been hard for me to accept especially since I still have not used the prescription of Planquenil as yet. Just simply too scared to do it. I'm just on a healthier diet, exercise, trying not to stress as much and see where the hair loss will stop...still confused with everything...

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