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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

Comment by Celia on December 20, 2014 at 1:00pm

Happy Christmas everybody !

Love Celia X

Comment by Alice on December 15, 2014 at 5:39pm

Anne Louise, I am so sorry to hear about your macular problem. I have been told that the opthalmalogical side effects are reversable once the Plaquenil is stopped, so I hope that is the case for you. I've cut my dose down to one tab per day and can't tell any difference. My scalp is red, bumpy, and itchy no matter what I do. 

Comment by Anne Louise on December 15, 2014 at 1:43pm

Well what I thought would be an innocuous conversation about dry eye turned into an hour and a half anxiety ridden optometry appointment. Turns out I have some changes in my macula that were not there 6 months ago. I've only been on Plaquenil for 9 months but already have early signs of retinal toxicity. This, I've been told countless times, is an exceedingly rare side effect and is more likely to happen after being on the drug for several years. I guess I shouldn't be so shocked as I have a history of falling into the "rare and unusual" category. Ovarian cysts rarely rupture; mine did. It is unusual to get mono in your 30s; I had a pretty bad case at 31. Thyroid nodules are benign 95% of the time...well I was in that 5% category. And we all know how rare FFA is, especially before menopause. I guess I should take heart in being a rare gem! Thanks for letting me vent, nice to have an audience who understands.

Comment by Annie on December 15, 2014 at 11:06am

NatalieW, I have also been using Minoxidil on my eyebrows since my diagnosis in March 2013.  My doctor said at my last visit that he could see no sign of ffa in my eyebrows. He also said that it is his experience that if eyebrows are affected it will be earlier in the ffa process, so he is hopeful that I won't lose mine. 

Comment by Sad in chicago on December 15, 2014 at 12:04am

This advice from my eye doc might have gotten lost with all the replies.....before bed, either genteal night time moisturizer (also systane brand) which is like putting a smidge of vasoline like goop in your lower lid.....makes things foggy for a while, but works really well, and then upon awakening before getting up, a drop or two of systane moisturizer, let it roll around and moisten the recesses of your eye,  it is cool and refreshing.  Helps much with dry eyes.  I am still wearing my contacts too, thank goodness.  On top of no eyebrows and a thing on my head, I will die if I needed my glasses every day too!

I know two people with Sjorgen's.....none of them have hair loss.

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