Replies to This Discussion

Permalink Reply by Chrisy, MA USA on August 13, 2013 at 11:41pm

Lexi, don't let this take over your life. If you want to have another baby go ahead. Kids are a blessing. Think positive and who knows... it might reverse the FFA. You don't want to look back after few years and you wished you did.

Permalink Reply by Debs on August 14, 2013 at 2:37am

Hi Lexi and Chrisy, thank you so much for the info in the injections. I have a fear of ending up with permenant dents in my head which will look unsightly and not actually help the hairloss, my bare scalp is just like a babies head and I can sort of handle looking at that although of course I would much rather have hair on it. Lexi, like Chrisy has said having a 2nd baby might re-boot your entire body and help to bring this FFA to an end. Go ahead and have a 2nd child if that is what your heart desires.

Thank you so much ladies, you have been a huge help to me.

Debs xxxx

Permalink Reply by Mareea on June 6, 2014 at 7:39pm

This discussion line is helpful to me. The feedback on the injections is particularly helpful. I think I might avoid that line of treatment. To Lexi, if you want another child then do not let FFA stand in the way. Your baby will love you regardless. My adult children have been a strength. They say that they hardly noticed the changes as they were progressive. They still demonstrate the unqualified love I crave although they could get on with giving me Grandchildren!!!!  Mareea

 

 

 

Permalink Reply by Celia on August 14, 2013 at 1:11pm

Hi Lexi - this is awful for you so young. Hopefully restorative treatment will eventually become available.
On the subject of steroid shots - never sure if they make a difference. I have had them 3 times now, done by Dr Harries. I have a distinct ridge now at my hairline and a long indentation running down the middle of my forehead. This is painful if I massage it. Also I have 4 one inch long veins running down the middle of my forehead, they don't show as I still can make a frings. There is also dimpling in my scalp close to the hairline. Sound a bit like Frankenstein ? ! No bolt through the head yet !! The second round of shots was excruciating for about 5 hours, no prob with the first. I believe there is no hard evidence that they work and it always seems that any 'evidence' is always qualified by treatment not working in all cases - to be expected I guess, but then I was told that we do not really know for sure what works as any positive change s may have occurred without such treatments. All vey baffling ! The registrar I saw first a few minutes before Dr Harries on my last visit laughed when I told him I felt that the addition of turmeric to my battalion of pills had helped with the inflammation, and said I shouldn't give turmeric ALL the credit, I think implying that Plaquenil may have helped.......I wonder if any of you ladies out there feel that Plaquenil is helping in any way - would be good to know in the absence of clinical trials. Off for a walk ! XXX

Permalink Reply by ElleMN, USA on August 24, 2013 at 1:46pm

Hi Lexi. My issues started after the birth of my kids too, both by c-section. I had my first child at 37 and my second at 40. Things really started falling out after the birth of my daughter in 2007. I'm now 46. Wondering what about the spinal block could cause FFA? I've been searching for triggers for 5 years. I also experienced itching on my legs; although I do have scalp itching just not in the area where there is FFA. My arms and legs are also bare. And I have like 3 eyebrow hairs on each side...

I also wanted to share my experience with steroid shots. I was getting them every 6 weeks for approximately a year and stopped all my treatment in March because it was so expensive and I wasn't seeing amazing enough results, just more hairloss. I did get indentations that bounced back after about 2-3 months. In one area on top of my head I lost hair with the indentations but that hair has since grown back.

I've lost about 1.5 inches on my hairline. Going to a pool party today and it's very windy here so there will be no hidding it today! I'm very open about all this with any one if the conversation steers where it's natural to talk about. I just try to stay positive and not let it stop me from doing the things I love.

I can't remember who was debating having another baby but I say go for it! Life is short!

Permalink Reply by LittleRhody on August 31, 2013 at 7:58pm

Thanks for sharing your story Ellen. It seems after reading so many blogs that I too share a similar story. I also had two C-sections and started noticing hair loss after the birth of my second child in 2009. I never thought about the spinal as a trigger. I just figured it was hormonal or possibly some sort of environmental thing. I am 38. I have been suffering from FFA for about 4 or 5 years now.

I have not started steroid injections yet. I heard many people say it does not work.

I am using Latisse for my eyebrows. It does seem to be working slightly. Also I take 1000 mg of Biotin everyday and a multivitamin. I have been very down lately. I try to stay positive. This website seems to be helping a great deal. I know it is only hair loss and there are far more horrible things out there to have. However I am a person of pretty low self esteem so this has been pretty hard emotionally. Thanks goodness I have a very wonderful and supportive husband. I can relate to what you are saying about the wind blowing. I just encountered that today. It is something I never thought I would have to worry about.

Thanks for sharing your story. It has been helpful advice.

Permalink Reply by Sam on August 30, 2013 at 6:32pm

Hi Ladies! Question for those of you that did injections, we're they done ON your hairline? I just had them today for the first time and they were a cm back behind my hairline. The doctor (and I think he's a top one, he's written tons of papers, does speaking engagements, treats many with this,etc.) I saw said you don't do on the hairline bc it won't cause regrowth but goal is to stabilize what you have. I am curious if the shots were further back and you still got visible indents on your forehead or maybe the shots should be further back. Also, he said that clobetasol causes veins to show and he stopped using for that reason. Again, for anyone that tried that lotion, was it used in your hair but caused veins on your face? Many thanks for sharing.

Permalink Reply by LittleRhody on August 31, 2013 at 7:48pm

Hi Lexi. I am new to this site as well. I am only 38 years old and a mother of two girls. I started young with this too. I was about 33 when I started noticing hair loss. My eyebrows started first. I too can relate to feeling down.

I have never heard of the stem cell research. I am going to my dermatologist in about a month I think I'll ask her about it. She may try steroid injections. I heard they don't work. I'm on a steroid cream right now and that does not seem to be working either. I have tried Rogaine for woman and that did not work. My dermatologist did tell me to use Latisse on my eyebrows. Latisse is usually used for eyelashes. I guess it works for eyebrows as well. I have been using it for about a month and a half and believe it or not I do see some hairs growing. They said it would take about 3 months. It is pretty pricy though. Well good luck if you ever want to reach out to talk I'm here to listen. I would love to talk to someone else I could relate to.

Permalink Reply by Sam on August 31, 2013 at 8:21pm

Hi LittleRhody, I'm new and on the young side too, just turned 41 and noticed my brows about 2 1/2 years ago. I am using lattise on my brows as well. I don't see much new growth where I put it but what I have seems to be sticking @ longer. I am also putting it (not a lot just couple if drops) on my hairline and I do see some new growth there. They are kinda baby hairs but hair nonetheless. The price does suck tho. I saw many cheap alternatives on amazon claiming to do the same but I am a little weary of whether they work and are safe.

Permalink Reply by LittleRhody on September 1, 2013 at 5:34pm

I thought of using it on my hairline as well. But the bottle is so tiny. I guess I'll just stick to my eyebrows for now. I do notice some slight hair growth. However where I want the hair to grow it does not seem to be working. Maybe I have scaring there as well. My doctor told me once you have scaring the hair will never grow back. Thanks for the feedback.

Permalink Reply by Celia on September 1, 2013 at 6:22pm

Hello All, I do believe that sadly once this FFA has begun......it's most certainly unstoppable in the outcome. I would recommend eyebrow tattoos, so that is one area to stop worrying about initially. What we are all I'm sure noticing on this site is that there are more and more younger women who have this problem. And this seems to be fairly recently. I still think that from a general health perspective, that using drugs might not be the best way forward esp for you younger ones.
I have had several rounds of steroid injections to no avail.
Sorry - wish I could be more positive about these - but - again the question must be - without them - would the hair loss at the hairline have been more rapid ?
I dread the next visit to the dermatologist. I have noted a pattern whereby I am called in and have to sit and wait in a lonely room for quite a while before being seen. Awful. I would rather sit in the waiting room with the rest of the poor unfortunates for longer, then get the consultation over with.
{ will be more upbeat tomorrow after a country walk - in UK and the weather is set fair. XX

Permalink Reply by Debs on September 3, 2013 at 2:46am

Hi Celia, I think ladies that what Celia has said in her post is true, the FFA will do it own thing regardless of the drug protocol we use however the drugs will for some of us slow the hair loss down. Any autoimmune condition is very tricky to treat because we are fighting our own imuune systems and of course we can't shut them down or we will be vulnerable to all sorts of nasties... Keeping ourselves fit and healthy with good diets and exercise, not forgetting of course to relax and make time to enjoyment is probably going to do as much good for our FFA as our drug treatments. I think we have to look at a holistic way of treating this condition because it effects of psychological health probably more than our physical health. I am going on holiday in a few days time so I look forwards to relaxing and chilling out for a week. Look after yourselves ladies xxx

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