Comment

Comment by PamW San Diego, CA, USA on July 20, 2013 at 1:57pm

AC, thank you, thank you, thank you. It was so generous of you to share what you have learned. I am very interested in the hair replacement you said you designed. is there any way that you can share more about this? Also, where in CA are you? Do you have to be a Kaiser patient to participate in the study? Thanks again.

Comment by Jules UK on July 20, 2013 at 9:11am

Thank you so much, AC. Your notes are really informative and very interesting. If you don't mind, I'd like to raise some of these points with Dr Harries next week, such as the laser treatment. Just off to buy some reversatrol!
Jules xx

Comment by AC from CA, USA on July 20, 2013 at 2:15am

Hello All,

Today, I finally saw Dr. Paridi Mirmirani, a dermatologist who is treating FFA patients and doing research on FFA. Helpful and informative! I tried to post my diary-style summary here, but it's too long. Instead, I am attaching a pdf file that is a full and lengthy summary of what I tried to post here.

Of course, I think it's an accurate representation of my visit and what we discussed, but I suppose it's possible I may have misinterpreted something. That's my disclaimer.

Best, AC

AC%20Consult%20Appt%20with%20Dr.%20Mirmirani.pdf

Comment by Pam on July 19, 2013 at 6:29pm

I am very interested in your new approach of consulting an immunologist, if such people exist! Any recommendations?

I have been seeing consultant dermotologists for roughly ten years, and quite frankly they haven`t been able to do anything for me.

I have tried more or less everything that other group members have tried, and am currently taking hydroxychloroquine twice a day, and using a steroid cream (synalar) on the front hairline when the hair folllicles get inflamed.

Am so depressed by it all, as my condition is now spoiling lots of things I enjoy, as I have become less able to hide it. Where should I turn for the best help on wigs and hairpieces? Can you get wigs which cover the hairline? I have lost about 2 inches, have got no eyebrows, and my hair looks thin! Advice welcome!!

Comment by Debs on July 19, 2013 at 4:13pm

Hi Linda, your detailed report of the treatment you have used is really useful, thank you so much for sharing. Xxx

Jules your idea of a timeline is great and might well reveal a cause and effect for FFA. Xxx

Comment by Jules UK on July 19, 2013 at 11:24am

Just a thought, but might it be an idea for each of us to try drawing up a personal timeline, with illnesses, medications taken and stressful events alongside onset of and flare-ups of FFA, to see if there may be any correlation?
The only drug, before FFA, that I took for any length of time was for a toenail infection. Just checked and a possible (rare) side effect is -you guessed it, hairloss! I'm going to give the timeline a try.
Xx

Comment by Debs on July 19, 2013 at 10:33am

Thanks Jules, I am using an organic shampoo and have stopped using hair dye since July 2012, a dermatologist at my local hospital asked me to stop processing my hair, my scalp never itches or gives me any irritation. I think it is a good idea to treat our scalps very gently. Xxx

Comment by Jules UK on July 19, 2013 at 9:36am

I thought this information was interesting, about ingredients to avoid in cosmetics/shampoos etc. hope the links work. I'm using an iPad and am not too good with "fancy" stuff like copy and paste on it!

//www.rebootwithjoe.com/9-skin-care-ingredients-to-avoid/#

http://www.soilassociation.org/whatisorganic/organicbeauty/uncertif...

Xx

Comment by Liz on July 19, 2013 at 9:34am

When I started to lose my hair I researched Lanzoprazole to see if it might cause hairloss and I read that it can cause thining of the hair in some people. I searched some forums and there were people who were experiancing thinning hair since taking the drug. I'm not sure either way if it's caused my FFA however I have male pattern type thinning too and the medication may well have contributed to this x

Comment by LTown on July 19, 2013 at 9:19am

.Hello Liz,I have been taking protonix for 18 years. I stared losing hair 8 years ago. I have tried to come off of it but it is so hard to. I have was off for several months until the end of 2012, then I came down with the shingles in January and decided to go back on it until I got over them. My hair started falling out again. oh my!

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