Comment

Comment by Jules UK on October 22, 2014 at 9:23am

Hey ladies - I've just had a look at the survey responses so far and FFA has a pretty good representation.  Well done!  Let's get some more and get ourselves noticed! xx

Comment by Jules UK on October 22, 2014 at 9:14am

UK ladies - just a reminder about the online survey to help with directing research.  Several of you have let me know that you've completed it already.  Thank you so much!  If you haven't yet, please do take a look.  It's worth having a bit of a think about what questions you'd like research to answer before you do, to save time.  Many topics have cropped up on this forum - there should be no shortage of ideas!  Then, it should only take about 10 mins, depending on how much you have to say, of course.

http://www.alopeciaonline.org.uk/hairloss_PSP.asp

Please do grab this chance to have a say!

xx

Comment by Jodie UK on October 22, 2014 at 8:25am

Claire, I have taken Mycophenylate mefetl, I didn't have any side effects to this drug but didn't find it made any difference to my FFA, the only drug I have taken that I felt actually stopped it was cyclosporine which is a very powerful drug, but the side effects were horrendous, so I had to stop after a few months and the FFA became active again as soon as I stopped taking it.
We all react differently, so maybe so this drug may work for you.
I attend Dr Susan Holmes at Glasgow Royal Infirmary, she works very closely with Dr Christos, and I have now been prescribed a drug called toctino, it is not licensed for FFA, so I guess this is an experiment, I have only been taking it for 7 days, no side effects as yet, but early days.
I would be interested to know if anyone else has taken this drug or has been offered it.

Comment by Anne Louise on October 19, 2014 at 8:05am

Hi Murphy welcome to our group and I am sorry to hear of your diagnosis. I just turned 47 yesterday and was diagnosed earlier this year. You will find tons of information and support here. You may want to consider getting your eyebrows tattooed. I have a post about it in the discussion forum above.

Comment by Murphy on October 18, 2014 at 8:25pm

Hi everyone. I'm new to the group. I'm 47 and was diagnosed with FFA a few weeks ago. Similar story, lost my eyebrows, receding thinning hair, loss of hair on upper arms and legs. I saw four doctors before being diagnosed and was relieved to finally have an answer. After a year of intense itching and burning of my scalp and body, I felt like I was going crazy!! So, I'm just starting to read through the posts. I used clobetisol, but got painful bumps on my scalp. I started a serious detox today (master cleanse) I did this several years ago and had relief of joint pain. I'm deeply concerned about my appearance and have difficulty styling my hair. I was wearing bangs to hide the fact that my eyebrows are gone but now the bangs are sparce! It will take me some time to read the posts but so relieved to have found this group!!

Comment by claire on October 18, 2014 at 12:13pm

I hope that the get together went well this week. I have not been writing recently as I feel really fed up at the moment as my hair is now going around my ears. My dermatologist is recommending Mycophenylate mofetil. It has side effects and just wondered if anyone had any experience of taking this medication?

Comment by Celia on October 15, 2014 at 1:18pm

Meme - I am so sorry !  That's very thoughtful of you to consider us.  I do hope you feel better soon.  Will let you know how our day goes.  Hope to see you early in the New Year ! x

Comment by Anne Louise on October 15, 2014 at 10:39am

I am going to a nursing conference on managing chronic inflammation with nutritional interventions this Friday. I will be sure to share anything that may be of interest to all of us here.

Comment by MJ on October 15, 2014 at 7:15am

Rita, I started by reading Dr.Weil as suggested by Debs here. I read all of his books and follow his website. He was the base, but then I kept reading others and decided to remove the gluten and dairy as well. I kept the eggs in, but only eat antibiotic free and range free. I eat lots of other grains, like brown rice and quinoa and legumes, which paleo and alot of other diets restrict. I now will cheat on things when eating out or on occasion. So, I sort of do my own combo of things, limiting added sugars, processed foods as much as possible. Also, lots of green smoothies in my Nutibullet. I may have mentioned in a past post that I literally was spring allergy free for the first time in forty years, without using any meds. Sorry to get long winded!
MJ

Comment by Debs on October 15, 2014 at 7:09am

Rita, Dr Joel Fuhrman and Dr Andrew Weil both have websites with anti-inflammatory diet explained in detail. The basics are GBOMBS this is greens beans onions(alluim family) mushrooms berries seeds(omega 3 seeds/nuts)

Both of these Drs have very easy food pyramids to follow. You can have an egg and a little omega 3 fish a couple of times a week. Grains are limited too. The emphasis is on veggies.

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