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Comment by Nina Jones on August 31, 2017 at 5:47pm

Many thanks for the tips, Diana. It all sounds good stuff and worth trying. I too like the idea that my hair follicles are just sleeping...just wish they'd hurry up and wake up!!!

Comment by diana on August 31, 2017 at 5:12pm

i agree with nina jones and joy.  i am doing similar things and my diet was always quite clean, but the gluten,dairy,sugar was not eliminated.  i do still have some but very limited and feel that my loss is slowed.  still lose the odd few a day but not crazy.  never took any of the drugs / prescriptions that the dr.gave me.  no way and am doing ok with my diet changes.  all natural, taking biosil drops, probiotics, quercitin/natural antihistamine... look into histamine intolerance also.  want to try the derma roller too..Joy i'm with you.  i think they are just asleep and we have to do the right thing to wake the follicles up. lets keep trying.  cant give up hope..

Comment by diana on August 31, 2017 at 4:33pm

have any of you tried the elimination diet.  think of alergic reactions to peanuts, seafood, etc. where people break out in hives.  i have had scarring alopecia/mine is lichen planopilaris ande. have lost from my hairline front & sides along with behind my ears.  started the AIP diet and i believe it slowed things down.  all diseases start in the gut.  leaky gut.  please look into this.  avoid gluten, dairy, sugar at first and see how you feel.  it takes time, wont help overnight.  try for atleast 3 weeks.  any itchiness/gnawing at the scalp will get better.   read up on the aip diet.  check out paleomom.com.  that's were i started in 2013.

Comment by Christi Q. on August 29, 2017 at 11:13am

Ana_Brazil.......I am also on Dutasteride for about 6 months now.  Have no idea whether it is working or not, but I DO know that I immediately put on 15 pounds once I started using it (I have a co-worker that the same thing happened to her as well).  I would like to quit taking it and just continue with the Rogaine but I'm afraid all my hair will fall out at once!  Did you notice a problem once you quit taking Dutasteride?  How long have you been off of it?

Comment by Ana_Brazil on August 28, 2017 at 6:39pm

Hi! I took a break this month from medication and started a diet based on probiotics too. I was taking orally: hydroxochloroquine + Dutasteride, agreed by my dermatologist in Brazil and a dermatologist from CA. The only diference is that in CA they want to use it for 4 to 6 months and here in Brazil they want me to keep taking. I am also using Rogain for man twice a day. We have seen improvement, but I feel I am still loosing hair slowly but steadily, as for the past 10 years. Now that I have taken a break, I fell different, I am not sure if I am normal, and my whole scalp itches once in while, but I am not sure if this is related. I am thankful that you keep talking, I check our comment wall as much as I can, and I share the information with my doctors. Someone mentioned a group of people with FFA in San Francisco, and I would love to hear from them. Thank you for sharing!

Comment by Nina Jones on August 28, 2017 at 3:28pm

Thanks Joy - interesting stuff which I will follow up. Onwards and upwards, hey!!!

Comment by Joy on August 28, 2017 at 3:13pm

I guess there are lectins in tomatoes - they use lectins as a binding agent in drugs like flu shots, pneumonia shots, etc , which kill off the good enzymes in our digestive tract - bad diets of high sugar and salt then feed the bad enzymes and head us to auto immune land - slowly - add huge stress - makes sense - after going to a naturopath (do not feel bad about the healer) he added fats and more protein back into my diet after a hair analysis - supplements to remove the bad parts of them - but those things are close to paleo thoughts - if you eat healthy no junk - the drmal roller pierces your skin ever so slightly - hammer is a Chinese version for hair growth - you tube as some with alopecia have had some amazing results

Comment by Nina Jones on August 28, 2017 at 3:04pm

Hi Joy - thanks so much for your feedback. I too have a very good diet - rarely eat junk food, lots of veg etc and have taken viviscal for hair ever since I was diagnosed. What is the info on lectins? I love tomatoes - are they bad for us?  And what is a dermal roller? The other tablet I take is hydroxochloroquine (have I spelt that right) an antimalarial tablet that is pretty standard for FFA sufferers which my dermatologist is reluctant to take me off as he thinks it might be one of the reasons why the progress of hair loss is so slow. I will start taking probiotics again, that seems to make sense. I do have an underactive thyroid gland - hence why I have always maintained a good diet because I don't want to put on weight - and this, of course, seems to be something else FFA sufferers seem to have, or a similar autoimmune disease. On a final note, I have a healer. Some people might think that's bonkers, but I go to India every year, and it was when I was out there a few years ago, a friend said 'what have you got to lose' when she suggested this lady, and I thought, yep, I've got nothing to lose, and like you said, if it doesn't hurt, go for it!!! So, every week, I 'WhatsApp' her, and she sends me healing - it gives me comfort and, as I said before, my hair loss is really minimal so far. I will go to any lengths to keep my hair, it was always my crowning glory, and if I feel I am in control, it makes me feel better. Look forward to any other ideas and top tips - thanks so much   

                   

Comment by Joy on August 28, 2017 at 1:49pm

Nina - I am four years out and I too have had only the initial loss of left side behind ear and around face about an inch - I had made dramatic diet changes and took vitamins to clear out my liver and kidneys - went off osteoporosis meds - you may be similar in what you have done without realizing that either of us were doing things that may have changed our course with this disease - I urge you to read thepaleomom - great explanations about what goes on in our intestines - compare it to the autoimmune diet - I am not on either of these diets but pretty much eat what they recommend without knowing that that was those diet plans - I also had several shots and had eaten a lot of tomatoes until I read this info on lectins - I also have listened to some of the Dr Gundry info - I am sure that there are other probiotics that would work as well - I had a dog bite about two weeks ago and had to take penicillin and they recommended a probiotic - I am gong to continue to take one.  Please do not think that I am recommending the strictness of these diets or his probiotics but that information combined with the woman that did the intense amount of research on the nerve endings of our scalp makes a lot of sense to me - many of us have known it was a perfect storm but I still believe that we are closer to figuring it out - I also think that many of us are sensitive to zinc and titanium and nano particles - the makeup industry is full of so many chemicals that we have absorbed - who knew - I also am either going to use the dermal hammer or dermal roller as I still believe that some of our hair follicles may just be asleep - can't hurt to try - stay the course and we will figure it out!

Comment by Nina Jones on August 28, 2017 at 12:16pm

Hi All

Can I just ask - is it absolutely inevitable that we are all going to lose our hair. As I think I've already said in a post, I was diagnosed with FFA 7 years ago. The hair loss I've had is around the ears, a little bit behind the ears, and approximately an inch on the forehead. As I had a low hairline to start with, the loss hasn't made too much impact, but when I read more on the subject on this forum, it does make me wonder if I'm lulling myself into a false sense of security. Is there anyone else out there who has only had 'minimal' loss after a period of 7 years or so? It would be good to hear.

Thanks                

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