Comment

Comment by Celia on December 10, 2014 at 3:42am

Hello Marilyn - welcome !  May I suggest eyebrow tattooing - if you get a good person - the results are a great confidence boost and one less thing to mess around with when getting ready to meet your public !!!!

Comment by Marilyn on December 9, 2014 at 10:51am

Thanks Anne-haven't changed any products but I'll be looking for answers from ophthalmologist today!!  Aside from oral meds. for the FAA-not using anything topical-tried many things that didn't appear to work-a frustrating process for sure-already shed many tears but still grateful it isn't worse-although I will admit not looking forward to a wig but darn I'm great on eyebrow application-got to keep a sense of humor-thanks all-really I so happy to have found you all.  

Comment by Classical Anne in NC mountains on December 9, 2014 at 10:08am

I should also say anything you might be using on your eyebrows or eyelashes.

Comment by Classical Anne in NC mountains on December 9, 2014 at 10:07am

Marilyn, my first thought is that it may be an allergic reaction to some product you are using on your hair, whether prescription ointment or over the counter shampoo or styling product.  Welcome to this friendly site!  Hope you find an easy answer to the burning in your eyes.

Comment by Marilyn on December 9, 2014 at 9:12am

Hi everyone-I am new to this group but I have a question-has anyone experienced itchy burning eyes with FAA-I was diagnosed in 2010 probably had it since 2008-in the last 3-4 months have had symptoms flare with additional hair loss but the last 2-3 weeks have had eyes that burn-going to dr. today but just wondering if anyone has heard of connection with this kind of alopecia.  Thanks so much!

Comment by Sas Holland on December 9, 2014 at 8:52am

Hi Rebecca, this stemcell transplant, it is very new and experimental, I think  they onlyperform it for about 2-3 years (at least on FFA patients)

Comment by Sas Holland on December 9, 2014 at 8:30am

I got my bloodresults  back: iron, ferritin, B6 en B12 all OK except vitamine D was  a little bit low, 67, but not very,  my GP says it should be at least 75.

 

I also finally heard from de Hair Science Institute  from dr Gho (hair stemcell transplants). They tell me that on 1 of  every 10 treated FFA patients the new hair falls out in about 1-2 years. But they didn't say how many FFA patients they have treated.

I am still having doubts about whether or not to take the Cyclo and the test transplant though

Comment by Kristen P on December 8, 2014 at 11:25am

I actually have low Ferritin levels, so no, I haven't experienced that! I've been taking liquid iron at lunch to boost them (at least when I remember to take it.) I can't take it in the morning or at night because I can't take with the minocycline.

Comment by Donelle on December 5, 2014 at 4:11am

Mycophenolate mofetil (MMF) is the pharmaceutical name for Cellcept.  It isn't called Cellcept here in the UK.

Comment by Classical Anne in NC mountains on December 4, 2014 at 10:41pm

Pam, I'm just so glad you're finally seeing a specialist about it.  It seems you have had more itching and burning than anyone else, and that it has gone on way too long.  I do hope they find that there is an allergen you can easily avoid from now on!

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