Comment

Comment by Classical Anne in NC mountains on December 31, 2014 at 2:59pm

Dear "Will be Healed",

Welcome to the FFA forum!  You will find friends, compassion, and support here.

Your story is interesting, though you have my sympathy for the FFA diagnosis. 

Rather than send email to the whole group, as you did, you will get better responses and conversation if you just post on this discussion forum.  If you are signed in, then scroll down to the "Comment Wall" and enter your message in the small comment window.  Then click on "Add Comment" just below the window.

I am interested in the daily supplement you mention, moducare.  I am not familiar with it and don't believe I've ever seen it mentioned on this site.  Can you give any further details: dosage, form, generic?  You may have added something useful and important to this discussion.

Best Wishes!

Comment by Marilyn on December 24, 2014 at 5:28pm

Very interesting re: prolactin levels-seems there is much connectivity with FFA-I too want to wish you all a peaceful, joyful Merry Christmas!!

Comment by Polly UK on December 24, 2014 at 4:57pm

Merry Christmas and a happy new year everyone!

I was diagnosed last week with dry eyes which the GP said was one of the symptoms of Sjogren's Syndrome another autoimmune disease. He knew I had FFA and a bout of episcleritis in August/September. This is all very interesting and something to discuss with my derm at my 6 monthly appt in January. I have been taking Hydroxychloroquine for 15 months but only 1x200mg tablet since July and one antihistamine tablet daily to help with the irritation on my scalp. I wonder if it's possible to have a test to check prolactin levels?

Comment by Liz on December 24, 2014 at 4:37pm

Merry Christmas to you all.

Thank you for the information about the eye problem and the prolactin levels, both very interesting and relevant to my history.

Have a peaceful New year everyone.

xx

Comment by Debs on December 24, 2014 at 12:21pm

Merry Christmas to you all and a healthy New Year.

Linda, thank you for this info, I have problems with the eye condition episcleritis since June this year. Will check out your info. X

Comment by Classical Anne in NC mountains on December 23, 2014 at 11:29pm

Very well said, Linda.  Now it's time to forget our hair [or lack of] and celebrate the Holidays with our families.  MERRY CHRISTMAS, everyone!

Comment by Linda from Cincy on December 23, 2014 at 10:39pm

You're welcome Anne, there does seem to be a link between high prolactin levels and autoimmune disorders in women in general.  I grow increasingly frustrated with traditional health care practioners who, rather than seeking to pinpoint the source of the problem as to why (in the case of FFA) our systems are attacking particular hair follicles, in particular parts of our scalp, instead choose to prescribe prescription medications that suppress our overall immune systems.  It's sort of like amputating a limb in order to treat an ingrown toenail. 

Comment by Classical Anne in NC mountains on December 23, 2014 at 8:57am

Thank you, Linda, for such intriguing information, and very useful links!  I think I should add prolactin to my frequent blood labs, as I have a rather large collection of autoimmune disorder diagnoses.  Very interesting post!

Comment by Linda from Cincy on December 23, 2014 at 7:43am

It's interesting to read that many of you are experiencing problems with dry eyes and other Sjogren's Syndrome type symptoms. 

  Just looking into it a little I find various studies linking that syndrome (and other autoimmune diseases) to high levels of prolactin.  I've also read other discussions on the Alopecia World forum in which certain members noted they had high prolactin levels and I see other studies that link high prolactin levels to hair loss in general.   

The enzyme Aromatase is also involved in this somehow b/c women who take aromatase inhibitors (due to breast cancer) experience hair loss which looks exactly like FFA.   In women aromatase is localized in the frontal hairline and when it exists in normal levels is why when women lose hair they usually maintain that frontal hairline.    Links to prolactin and aromatase articles below.

I know there are many wonderful MD's working on this but the majority are so bound up with the pharmaceutical industry they can't think outside that box.  In the end result I think we'll most likely have to figure this out for ourselves

http://www.ncbi.nlm.nih.gov/pubmed/15153869

http://annonc.oxfordjournals.org/content/24/6/1710.full

Comment by Pam on December 21, 2014 at 1:41pm

Yes, Happy Christmas to everyone!

Pam x

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