Hi Jess, they say I need to take twice a day 200mg, so that's a high dose.

I still have not heard back from them yet, which gives me more time to think it over though.

This post is to C.  I went to the derm today and they want me to take cellcept also.  what dosage were you prescribed?

Thanks for sharing this Kathy and Mike'sDeb,

I too try not to bother to much about my FFA and to accept it and keep in mind that there are much worse things that could happen. My kids, husband and myself are healthy and happy and that's the most important thing in the world. I am more and more inclined to not taking the Cyclosporine after all and thus not have the HSI transplantation.

I already use the Curly Girl (CG) method for my hair,  for a year and a half now, which is not using shampoo with sulphates, no silicones in conditioner and styling products and no parabenes in both. My hair is much more shinier, healthier and curlier  and less frizzier than before.

yes it is very good isn't it Rebecca, which conditioner do  you use?

I use Devacurl (but it's  not for sale in Europe, or it was.t untill now, so I have to pay a lot of VAT taxes) and Jessicurl.

Hello all

I am writing to report on my visit yesterday with my dermatologist, Dr Aisha Ali in London.  Let me first say that Dr Ali spent a long time just talking with me.  She was entirely personable and concerned about the lack of attention paid to those suffering from this disease.  I mentioned that I'd gone to the CARF conference in November and that I had met many women there who do not seem to fit the FFA profile. She thinks the profile (middle aged, middle class, well educated postmenopausal women) is inaccurate; she has seen many more types of patient than one would expect, including many men.  She thinks this is a result of failure to seek treatment and in many cases misdiagnosis.  She is passionate about getting the information our and has asked me to spread the word that she runs a hair clinic at Charing Cross Hospital on Tuesday mornings.  Anyone living in England can ask for their GP for a referral to this clinic.  She also has patients from Scotland and Northern Ireland but the referral may not be as straightforward.  Dr Ali will also be working with Dr Christos on his DNA project.  Finally Dr Ali said she treats every patient individually and does not prescribe the same drugs for everyone.

I have had FFA for a number of years.  I was misdiagnosed for a number of years by London's top NHS dermatologist.   Since the summer my hair loss has progressed and now I am experiencing itching and burning that are at times overwhelming.  I had been taking hydroxycloroquine but Dr Ali has switched me to Cellcept, saying that this is the frontline treatment now.  I am concerned about the side effects but she assures me that cyclosporin has more of an impact on the liver than cellcept.  I will have to have my blood tested weekly at first then tapering off.  The goal is to keep the hair loss at bay until the disease burns itself out.  Dr Ali assures me that this does happen, and has happened to several of her patients.

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!

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

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.

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

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)

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!

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.

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

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.  

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 !!!!

I totally agree with C about the eyebrow tattooing. I had mine done again (4th time in 10 years,  since I don't have any eyebrow hair left) 10 days ago and i am so happy with them. I just uploaded a picture of them in my photo album.

Hi Marilyn, welcome to the group! I wanted to comment on the itchy eyes, since that has been a symptom that has just started for me as well—some days worse than others. I was diagnosed in 2011 and I am sure I had it for a few years before that. I had never had discomfort—the itching/burning scalp thing until this summer. My doc, who lead the CARF conference here in Chicago, increased my Plaquenil dose to 400mg twice a day! The burning has really subsided although there is still loss.

I've been wondering if the dry eye was due to the increased Plaquenil dosage, or allergies, or not drinking enough water, or the dry winter air. . .  anyway I will be going to an ophthamologist after January 1. I would be interested to hear any follow up on this.

Thanks for sharing.

now that you mention it, I was diagnosed with dry eyes also about the same time my eyebrows were falling out. I had to stop wearing contact lenses then and I wear glasses ever since. I don't have to use eye drops, because I only had trouble with it when wearing contact lenses.

Thanks for all the great feedback-I have a bit of infection under upper and lower lids of eyes-have drops now for 3 weeks-Dr. said it wasn't allergy related and he didn't believe any connection to FAA-not sure how much he knows about FAA but with drops, warm compresses and tears for dryness-he said all should resolve.  I already feel a bit less burn and itch after 3 application of eye drops -tobradex.  I have thought about eyebrow tattoos but haven't found a great artist here where I live.  Someone posted, a woman in Boston-wow, those brows looked great.  Any one from Mich. let me know if you have found a great tattoo artist for brows.   Chris C I  need to get info. on Carf meetings or group in Chicago-at least you are closer.  It's only a 30 -40 min. plane ride and I believe 3 1/2 hr. drive-depending on traffic!!  Again, thanks for the responses-I don't feel so alone in this process that most say "won't kill me"-and yes indeed I know this and am grateful but......you all understand.

I also have a problem with dry eyes.  I never really thought about it until I mentioned to my eye doctor that I couldn't sleep in my 30-day contacts because they become uncomfortable after about 14 hours of wear.  He said it was due to dry eyes.  I honestly don't know which came first - the dry eyes or the ffa, but I definitely had problems with the dry eyes before taking Plaquenil. 

ok, I meant to say FFA-not FAA-I think that means I want to travel-lol!!

I have also had a problem with dry eyes and had to stop wearing contacts several years ago. I'm not sure which came first either, the FFA or the dry eyes. Interesting!

Hello all - I was diagnosed with FFA in April 2014 and also noticed this year that I sometimes have a hard time opening my eyes, like my lashes are sticking together!  I just figured dry eyes and never put it together with the FFA.  Interesting.

Also I was diagnosed with breast cancer October 2014 (yeah, its been one of those years).  Both my dermatologist and oncologist see no connection between FFA and the BC, but I was wondering if anyone had any information to share on that subject.

I had problems with dry eyes, and falling out eyelashes, for years before I noticed any hairloss on my head.  Two eye doctors commented that the follicles for my lashes looked inflamed. Restasis, which is cyclosprine drops, has helped the dryness. I also don't notice my lashes falling out as much as they did, either. I figure all the inflammation is related but I'm not sure how much is autoimmune in nature.

Hi MJ-I'm in West Bloomfield.

My goodness, Ladies!  So many dry eyes!  I have struggled with dry eyes, stuck together and burning in the morning, burning in the evening to the point I cannot tolerate a ceiling fan, burning so much late at night that I can hardly read or watch TV, and occasionally [but not often] itching like mad!  Although it has been worse in the last couple years, I have experienced it for many years.  I honestly never thought to consider it a symptom of anything else.  But with the number of autoimmune diseases I now have, perhaps there is a connection to that aspect of it.

I have never taken Plaquenil, so that's definitely not it in my case.  But I have also always had extremely dry hair, dry skin, dry mouth, dry nostrils, my husband even says I have dry wit.  I have used eyedrops on and off for a couple decades, and I gave up wearing contacts close to 30 years ago.  Conclusion: in my case dryness is not a symptom or result of anything to do with FFA, but it certainly could have been an insidious catalyst.

Cubbie Blue, I am so very sorry to hear of your breast cancer diagnosis.  I know you must have a fine oncologist in Chicago, and hope that your therapy is entirely successful, and not too uncomfortable!

MJ

I'm not a member but would certainly join and have no problem attending a meeting with you-I would look forward to meeting someone who is experiencing the same diagnosis!

Regarding the dry eyes: Put genteal night moisturizer for eyes in before bedtime, it is sort like vaseline for your eyes, and then use Systane eye drops first thing in the morning before you get out of bed......this all helps.  My eye doc turned me on to it.

HI everyone - just wondering whether anyone has had PRP and found it helpful.  I have just had my first session and wondering whether it is worth the expense. Also, wondering if anyone uses Minoxidil on their eyebrows? thanks

What's Elidel?  I used to use Rogaine on my brows but stopped.  I might try again.

Hi. I have read with interest about many of you who have dry, itchy eyes. Mine are a constant problem, for the past 18 months at least. In fact the only relief I have had was this past 10 days when I was taking prednisolone for a different problem. My eyes are so dry, they itch, burn, are blurry. I would be interested to know what things people use? I use Hyco Sans and|Opticrom. I even go to the opticians and eye hospital about them but never thought it might be related to the FFA. I also have chronically itchy ears which drives me insane at times.

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.

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. 

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. 

Happy Christmas everybody !

Love Celia X

Yes, Happy Christmas to everyone!

Pam x

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