Replies to This Discussion

Permalink Reply by Chris on March 11, 2016 at 10:04pm

Hi Kikibob, I decided not to go with any medical treatments due to all of the possible side effects. I'm gluten free and I eat a very good diet to try to reduce inflammation. I've had improvement in skin rashes that I used to get on other parts of my body, and a reduction in joint pain and swelling, but nothing seems to stop the hair loss. I wear wigs now. I've also lost my eyebrows, the hair on my arms, and most of the hair on my legs. I've accepted the fact that my hair loss is permanent, and I'm unwilling to use any extreme treatments, but that's me.

Permalink Reply by Gai on March 20, 2016 at 1:36am

Hi Kikibob,
I have decided to try the topical steroids, but will not be trying oral medications, if the eventual outcome will be the same. Most of the drugs the dermatologists recommend have huge side effects,can cause cancer and destroy the microbiome in the gut. I am also trying the autoimmune diet recommended by Sarah Ballentine as it makes sense. I have lost about 1.5" of hair from my front hairline, and so far a fringe covers the bald bit, but think I will need a hairpiece by the end of the year.

Permalink Reply by Robin on March 20, 2016 at 10:33am

Gai, glad to find another AIP eating FFA woman. I am taking finasteride 5 mg. There does not seem to be the terrible side effects of the immunosuppressants. It has helped a number of women with FFA and seems to currently be the drug of choice with the dermatologists. So, I am taking it. I am also not so convinced about the clobestrol topical and am seeing what it is like not to use it. I have read that many do not think it works......not sure about this....wish there was a clear answer. What a weird disease we have......I do think for overall health eating an anti inflammatory diet is good and I am convinced of that.......hoping it does help and arrest the FFA too. I understand that it takes a while for skin diseases to respond. I have been on AIP diet for 4 1/2 months now. I love it and will continue. I will see my derm in one month and then evaluate where I am. Good luck to you....get Sarah's new book, Healing Kitchen, it is great...you will find strategies that will help you stay on track. Also, the podcasts on pheonixhelix on autoimmune disease are really informative and supportive.

Permalink Reply by Gai on March 21, 2016 at 2:48am

Hi Robin, I have just found the web site Phoenix helix too, and it is really good. I have Sarah's original book and find it a great resource, makes a lot of sense to me too.
Do you have other autoimmune disease too. I have Hashimots and some literature says they can be linked. Can't wait to see what else is down the track. I have been gluten free for 10 yrs due to hashimotos,and dairy and grain free for 2 months. I definitely feel better, and my blood results are better as well. If I could just get the forehead itch under control I would be happy. Both sugar and stress definitely makes it worse. Good luck, and keep in touch as we might stubble onto some useful treatment.

Permalink Reply by Robin on March 21, 2016 at 9:34am

Gai, thanks so much for your reply. Yes, I also have Hashimotos. Can you pass on a link to the research that you found linking Hashimotos with FFA? I was diagnosed about 3 years ago. I may have had it a while. I had my thyroid tested when I noticed that I was having eyebrow thinning. I thought going on thyroid (armour) would stop but it continued until I lost all of my eyebrows and then after seeing my hairline loss I was finally diagnosed with FFA. Bummer......I have toyed with gluten or at least wheat free for a few years and being lactose intolerant I have not had dairy except for goat cheese or yogurt for years.....now I am fully AIP and it makes total sense to me too. I have also had years of body pain (unexplained) that I know is related and inflammatory reactions. I have said for years that my problems are inflammation. Unfortunately my scalp has received the brunt of it. I think the best I can do now is calm down my immune system. At least I think there is something I can do. And now there is so much evidence that gut health is crucial to overall health and immune function. So I am rowing this AIP boat now hoping for a better shore.....I look forward to sharing progress and thoughts....May our bodies and hairlines be healthy and strong!!!!

Permalink Reply by Gai on March 22, 2016 at 12:14am

Robin, great to hear from you. I think the biggest progress I have made has been a dietary one to beat the generalised body inflammation. I broke my neck about 20 yrs ago and lived on ibroprofen for a few years. I now have read that does a lot of damage to your gut, and destroys normal flora leading to a leaky gut and then food sensitivities. I have found taking digestive enzymes with each meal has helped enormously (I take Thorne Research 'Biogest'). I also take a probiotic each night before bed, and vary these. My food sensitivities are now less than before, but it has taken 18 months. I am still doing the AIP diet, but when I occasionally get exposed to some problem foods I react less. The other issue with inflammation is that the 'methylation' cycle that helps rid body of toxins, is not working as well as it should. I take a multivitamin that has methylfolate in it and it has given me so much more energy. I have also found my inflammation is less. A good website explaining this is mthfr.com. I will have to find the thyroid FFA link again, as can't remember where I saw it. Cheers

Permalink Reply by Robin on March 22, 2016 at 9:49am

Thanks Gai, I will look at the mthfr.com. I also was a big ibroprpfen user because of unexplained body pain.......I am sure it was a pre autoimmune condition......I know I have more gut healing to be done.......

Robin

Permalink Reply by Lo on March 22, 2016 at 11:48am

Hi, Robin!  I just read through some of these posts... and thought I would say hello.  I, too, am taking finasteride - 5mg/day.  I have been for 14 months.  I'm not sure if it is helping or not.  It is very hard to tell if a medicine is "working", as we don't know what would happen if we weren't taking it.  Plus in addition to the finasteride, I am on Celcept (immune suppressant) AND Actos (diabetic medicine thought to possibly work in some patients).  Ugh... I am not loving the fact that I take all of these - but at the same time, am scared not to.  I have had FFA for 5 years, but only diagnosed correctly for 14 months.  I was told in 2011 with the full loss of eyebrows and loss of hair above both ears that I had alopecia areata.  I went years before finally asking my new derm why it wasn't coming back... and finally she said, "We should probably test to see if it is scarring alopecia."  That was 14 months ago... diagnosed with FFA.I've lost a good 2 inches above both ears... and at temples... and it is now progressing at my front/top hairline (about 3/4 inch).  I am still wearing my bangs and bob hairstyle to cover... but also have tape-in pieces to use above ears, and have had extensions put in for fullness.  I am 44 years old now.  So... I have to ask, Robin - is that your "real" hair in your profile pic?  It is adorable.  How much have you lost, overall - and how long have you had this?  Hope to hear back!

Permalink Reply by Robin on March 22, 2016 at 2:44pm

Hi Lo, I have had this for about 3 years I think. I was diagnosed last Fall.......poooooey! I have very very curly hair and every where I go people say, "I love your hair!" and I think, "yeah, hope I get to keep it!" Crazy to have hair that is constantly complemented and then having this funky disease....Hope this stops!!!!!!!! Hard for me to do celcept. My daughter is a transplant patient and I know that those are tough drugs with side effects........I decided not to go there. Hoping I can help the inflammation in my body with diet........we will see.......I have lost above my ears and the temples and some top forehead.....I can still disguise it...people can not tell but I can.......Let this stop!!! For all of us!!!!! My husband says I will be ok, yeah, I hope so.........he will still love me if I am bald......guess we have to do what we have to do.........

Permalink Reply by Lo on March 22, 2016 at 2:55pm

Hey, Robin!  Thanks for the response!  (My name is Lori - but my friends have called me Lo since I was a little girl...)  Anyway - I DO love your hair.  I can still hide mine, as well... most of my loss is, as I said, above the ears and at temples - so pulling it forward and having bangs/fringe helps.  But yes... I notice it.  We are our own worst critics I think... And you're right... we need to do what we can diet-wise and attitude-wise to rise above this and take care of the things we CAN control.  And I am SO glad that you have a supportive husband.  I think that is paramount with this diagnosis.  Mine - well... let's just say he could be a bit better.  He does not like to speak of it - ever.  It is kind of "off limits" and that frustrates me so badly!  I think maybe he knows he cannot "fix it", so his way of dealing is through avoidance.  But that doesn't help me.  Thankfully I have this site - and amazing friends - and family.  That helps.  And... the cutest, sweetest 9 year old I could ever ask for!  He is my saving grace, really.  Love and happiness to you... and thanks for your response! 

Permalink Reply by DragonandFox on March 13, 2016 at 8:36am

Hi Kikibob.

great questions and post.  here's my response to you:

1)had any good results changing to an anti-inflammatory diet (like Dr. Andrew Weil's)? 

I have not tried an AI diet, but about a year before diagnosis I was told by my general Dr. that I am totally Gluten Intolerant. I went off it completely & it made a difference by way of eliminating migraines and daily nausea.

2) Has anyone had any good results with acupuncture? 

I've been getting acupuncture since the mid 1980's (off and on of course) I swear by it.  I started getting weekly sessions immediately after my FFA diagnosis in Feb 2015.  It helps, most definitely, but in my case, it's not a cure, it's maintenance and prevention, but I still get other things, they're usually squashed in an acupuncture session. Some things can't be and this brings me to the statement you made about inflammation.  yes, inflammation is a chronic problem that is almost always associated with instigating a myriad of problems a person can suffer.  For me, indeed, I have too many at 53. As my Physical therapist says, the people who lived active full lives are the ones who end up with chronic issues needing consistent PT. That's me. I always ate "organic", fresh food, vegetarian, no preservatives, health conscious, I studied professional dance, took non pro classes later and became a yoga enthusiast, a swimmer a snowboarder, traveled a lot, etc.  now? you'd never know.  Acupuncture helps the inflammation MOST definitely!  depression, anxiety, the redness and soreness of the FFA, etc.

3) any good results with a course of steroids followed by tetracycline antibiotics?

Just this week my Dermatologist wrote me and said if I wanted, I could get on the tetracycline antibiotics but I refused. I was annoyed she even suggested it. The side effects are ridiculous to me. One is you can't take Vitamin D or get sun exposure. Uhm...Vitamin D is the TOP vitamin Dermatologists came up with to treat FFA at the World (or national) Hair conference this past Fall!  And Sunshine? really? no sunshine? Again, linked to Vitamin D.  I felt like, along with those reasons, I was not willing to destroy my digestive tract with regular use of antibiotics, probiotics or not.  Not to mention, I suspect the tetracycline antibiotics is in the testing category, I doubt they know how that will effect us in the long run. I'm on 5 mg's of Finasteride & topical steroids (Clobetasol) which I recently read has its own side effects that are concerning me. 

4) Has anyone tried Serrapeptase - an enzyme which is supposed to dissolve "hard" tissues, like scar tissue?  If so, any positive effect?

no idea about this one.

"I've read that many people have inflammation basically out of control in their bodies, so my mind is wondering "is inflammation the culprit here?" and will reducing it help?"

yes, inflammation is the culprit. but what FFA is, is that the immune system thinks the hair follicles are a threat to the body and so the immune system is trying to kill the hair follicles off.  hair regrowth is only possible if the immune system has not literally "killed" the hair follicle. That's why biopsy is important, they can tell.

This disease is very disheartening.  I find I've had a great deal of comorbidity since diagnosed with FFA.

Permalink Reply by Kikibob on March 14, 2016 at 12:55pm

Thanks for all the responses here!  Robin, wow, I've looked at the Paleo Autoimmune diet and I just don't think I can go that restrictive.  I may have to down the road though.  I've started Dr. Andrew Weil's anti-inflammatory diet though and I hope it will help with general inflammation anyway.  I started acupuncture last week and, if it doesn't directly help, it really did make me feel great.  I also started Clobetasol last week.  Chris, like you I just can't see taking those drugs that are meant for a bad prostate or malaria... so many side effects.  I had early stage breast cancer 13 years ago, so I just can't make myself do Finasteride.  Dragon&Fox thanks for illuminating the connection between tetracycline and no Vitamin D.  We DO need the vitamin D for sure. 

 

Ugh!  I don't want to lose my hair, but it is so difficult to know what to do. 

 

My acupuncturist, who has a Chinese medicine background, recommended a naturopathic doc. she knows to collaborate with her.  My regular doctor said "If Western medicine hasn't found a cure, I don't think Chinese medicine has."  I told her, yes but they've been treating people for thousands of years so, who knows? Sometimes, I feel like I'm pulled between East and West... and I've always been a pretty conservative science based, show me the evidence, type of person! 

• ‹ Previous
• 1
• 2
• 3
• 4
• 5
• Next ›
• Page