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Comment by LittleSadEyes on August 10, 2015 at 9:26pm

these are the most recent... 

Comment by LittleSadEyes on August 10, 2015 at 9:20pm

Lo, i have heard nothing back VERY frustratingly. But since using rogain the already bad recession is worse.
I'd also like to ask for all the peri menopausal women, is your shed far worse during your period? 

I am using a dermaroller once a day and 5% rogain twice on whole head, recession and brows. I seem to be gaining no ground, only shedding far far more and i have been using rogain for maybe a month.. perhaps a bit longer. Maybe like 5 weeks. I have taken some photos In the one month that i have had my hair done just to show you.

Ladies. No my derm has not told me anything solid, yes i have hairloss all over my head badly... but my hairline is undeniably receding very badly. With no recovery. So IN YOUR OPINION.... is this ffa? Is it like yours? Please me me

Comment by Lo on August 10, 2015 at 8:29am

LSE, I'm not sure because I was told by my derm not to use rogaine... But I was curious if your biopsy rests came back and what they confirmed. Sorry if you already told us and I missed that thread.

Comment by LittleSadEyes on August 10, 2015 at 4:30am

Does anyone notice any tiny little almost invisible peach fuzz hairs around their hairline at all? Also I have been using Rogain on the recession areas where it's basically now just skin with no terminal hair, and I have noticed some little sparse black hairs growing where there weren't any before, but my hairline itself is still receding REALLY fast. Is it just that the Rogain is helping those last straggly hairs to grow before they eventually die? I'm so confused because I refession is sill so bad but there is the most sparse ever re growth around my hairline which doesn't make up for the recession but it's still there/.. Help me!

Comment by KarenGinny - Iowa, US on August 8, 2015 at 11:46am

One thing I've found to deal with my hair loss around the front is to wear headbands across my forehead where the bare spots are. If you don't mind the sporty look, there are many kinds to choose from. I've bought them at Wal-mart and have different colors or prints to match my clothes. I wear them mainly when I'm going to be outside when it's windy or just outside in general, or more active. I can still pull my bangs to the front and hide my hairline fairly well, but the head bands give me extra protection. I've worn them swimming too, although I don't get my head under water.  Bolderbands.com is one brand that are nice.

Comment by Wyobalance on August 7, 2015 at 8:10pm

So many angles to attack FFA and so many meds that work for some and not others.  CARF (Cicatricial (scarring) Alopecia Research Foundation) will be holding it's Patient/Doctor conference June 3-5, 2016 in New Orleans.  http://www.carfintl.org/ for more info.  It's good to meet others with this frustrating condition.

Comment by Mel on August 7, 2015 at 5:28pm

I saw your comment, too, yukonalopecia. I, too, am conflicted. Urged by the dermatologist to treat, but, while I used clobetesol some, I stopped after roughly 15 days total use and doubt I will take the plaquenil. I don't have the book yet, but there's a short section about the corticosteroids in Sarah Ballentyne's book on the autoimmune protocol. Exactly what I had described from both the shots and clobetesol is the way she describes what it does to us. Like you become dependent and when you stop it returns with a vengence. If she's right, then food is the best way to go. Not working for me yet, but I'm putting my faith in the AIP diet for now...

Comment by yukonalopecia on August 7, 2015 at 4:46pm

It was me who sent an email out, I mean to add a discussion.  Still new to this. Sorry. Sad in Chicago, thanks for your feedback.  I feel the same way.  I am trying my hardest to focus on how I feel rather then how I look.  I am starting meditation, clean eating and increasing my daily steps.  My doctor is great, and wants me to continue to fight the disease, but at what cost?  No energy, high anxiety, low mood, dizzy spells.  Though it is hard to stop worrying so much about how you look living in our current society.

Comment by Sad in chicago on August 7, 2015 at 4:23pm

Someone sent an email message about is it ok to stop trying to stop FFA with medicines, treatments, etc.  Don't know if it is "right" but indeed, I have stopped treating the condition.  I have spurts where I think it is flaring up again with some increased loss, but overall, it is so slow that I think it does not make a difference and I am will not use crazy things to try to stop it.  I only want it to grow back.  it is advanced enough that even if I stopped it, I would still need additional hair pieces, etc., to cover the damage.  I did go on weight watchers and trying to eat unprocessed food only, and am having a bit of success in feeling better in general.  I have to exercise more, but have been reticent because of the hair issue and how I look.  I am walking with a hat on and trying to do 10000 steps a day.  This disease makes you a little lonely.  Hard to go on invited vacations, etc. to places where you need to be free like the beach, etc.  UGH!  But, I am trying!!!!!!!

Comment by Mel on August 7, 2015 at 1:58am

Mike'sDeb -- interesting about your diet. I am trying the AIP diet, >2 months now, but I still see inflammation (big time) at my hair line and feel it's receeding more. I've read that skin is a "last priority" organ and takes longer to heal than other autoimmune conditions. How long after you changed your diet did you notice improvement in your FFA? ...Personally, I LOVE bread, pasta and pizza, etc., and hope that if this works I can work back at least the gluten free options. AIP is no grains, sugar, nightshades, seeds, nuts, guar gum, soy/legumes ...so you pretty much cook at home always. I was not trying but lost 10 pounds and would be happy to stay at this weight. That was after 7 weeks and I'm still the same weight, so I am not worried about losing more.
On a different topic, I had read that if you get an autoimmune diagnosis and have any infections, get them cleared up. I was told by my oral surgeon that, looking at my X-ray and CT scan shows no infection. (And he believes anything happening with my impacted tooth, laying on nerve, with cyst would NOT affect FFA.) STILL... I had a high-risk oral surgery today and he said it was VERY infected. So, here's to hoping this might help, too. Clearing up an old infection I didn't really know I had!
Anyway, hoping diet can make a difference ...just wondering WHEN!

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