Hello All,

I am reaching out to the AU people out there... just wondering a bit about your stories. I have been presenting with diffuse scalp loss for more than 2 years, about 6 months ago I noticed thinning brows and lashes (the rest of my body hair is easily plucked). Endo says possible UA, not sure though. I have had all the lab work and everything is normal except low ferritin and deficient Vit D. From everything I have read research wise, AU typically presents very rapidly. My loss seems to be slower, lost more than half of my hair in this time frame, can see my scalp and I am thinking about supplemental hair. Still have brows and lashes, but they are getting patchy. Anyone out there with some insight to how AU presents? I know it is different for everyone, I guess I am looking for a similar story to mine.

Thanks,

Jen

Views: 764

Reply to This

Replies to This Discussion

Hi Jen, I know this whole AA,AT,AU thing is confusing to me too. My Doc said she considers me AU, although I took even longer to get here, It took ten years before I lost so much head hair that I just shaved what was left and got a good replacement, once I shaved it all my bio hair on my head was gone withing about 3-4 months, boy did I time that one right:D I have lost pretty much all of my eyebrows, and I lose and regrow my lashes, at times I will be missing all the tops on one eye and pretty much dont have bottom lashes at all. Now that being said I do have a little bit (a patch or two) of hair on my legs, but only a few fine hairs on my arms. I still have underarm hair DRATS!! and haven't gotten the Brazilian yet YIKES. so I'm confused too, I asked my Doc, about the fact that I do still have some hair in various places, and her comment was, for how long? she said that the fact that I have those weird white alopecia hairs over my scalp are meaningless, as they are not really my bio hair, and don't count. My constant hope is that these few weird hairs on my scalp might mean that I could have hair again, but they are less hopeful. I'm even unclear as to weather I would be able to really say AT, because it seems like most people I see on here who are AT are completely smooth. Hope others can give a real explaination of this.

Thanks for replying! Were you constantly thinning for the ten years? My hair sheds so much, particularly when washing and blow drying. My profile pic is from about a month ago. That's the only way I can wear my hair and cover the problem area, but it is getting more difficult to do that. I am thinking about going and looking at some hair soon, thought it would be a cathartic experience. What kind of hair do you wear or recommend?

Well, the way it began was a completely bald spot at the nape of my neck on one side, it grew back and I developed a spot similar on the other side. for quite some time my hair would fall out and regrow, at first just the bottom until it was finially mostly gone all the way around. it's called the Ophiasis pattern of AA. when I began losing spots in the top part it was just too much, I don't know really how I actually knew it was time, but I guess it was just getting more difficult to work with, and oh how I remember the washing and rinsing, and the pile of hair on the edge of the tub. I hated that, and the going through my hair and pulling out the the detatched ones all the time, so sickening, It sounds like your about right where I was, I felt pretty good about it at the time I did the shave, but sad too, it's hard to feel strong and at the same time like your giving up. I got a Follea Gripper cool, I've been happy with it, and for me cost was an issue over the Freedoms, cost just needed to be considered. The hair is great, and looks natural, totally stays on, no tapes or glues needed. But they are expensive too. I haven't really shopped around for others, like the lace wigs, but would consider this as an option too. Someday I may get a Freedom, we will just have to see. Let me know what you decide.

Christine

Christine... Thank you so much for responding! It's nice to hear from someone who has gone through this. Sorry to bombard you with questions... But... Lol. Did you ever have burning and pulling sensation on your scalp? It feels like someone is tugging on my hair all the time, like it is back in a tight pony tail. Also, it breaks as well, I thought it was new growth, but now I am convinced it is breakage because I see hairs of all lengths falling out. I just found an alopecia specialist in Atlanta Ga, I am going in November. I have had no luck here in Chattanooga area with doctors. The endocrinologist put me on dexamethasone for a 3 month period, he stated that if it is inflammatory related I shpuld see 50% decreased hair fall in that time frame. Well, I am one month in and am shedding way more than before the steroid was introduced... Not sure what that is about?? What kind of treatment experiences do you have?

Jen

Jen,

  I didn't have the hair hurting ponytail feeling, but I've heard others say this is quite common, I have had the scalp, burning some, but really Had lots of itching scalp, from time to time I notice it still, when I still had my bio hair it seemed to go along with a falling out time for me. As far a treatments go I did not do the injections, because of my pattern of hairloss the success rate wasn't worth in my opinion the pain, and possible side effects. I did do the topical Clobetasol, which I developed some slight infections from, so as it wasn't helping anyways I just stopped. The one thing I did that helped was Minoxidil, but it quit working and when I had to stop it, that was when my hair really began to go. I have since heard that Minox works for 5 years and thats it, and when it quits working you lose even more hair...eek, Crazy because thats exactly how long I used it with success, I still would lose, but it would grow back super fast. I'm kinda wondering in the back of my mind now if in the end it really worked against me, I guess I'll never know for sure. Taking Steroids do suppress the immune system and I know some people will have less hair falling out on it, but honestly, I don't think the side effects are worth it, look them up, I would not take them for more than 3 months, for sure, but lets say they do work, what then, you don't want to take them for the rest of your life right. I'm glad you are seeing a Dr, and I hope you get some good treatment options. Just weigh everthing with the health risks, and that way you will be making a educated decision. Keep me posted about the doc visit :D

Hi Ladies

My daughter has been AU on and off for the last 11 years.  She does get a little discomfort when her alopecia is active.  In the last 11 years she has also grown back her hair 6 times...but sadly has always lost it again. Her alopecia presented itself over a 6 month period when she was 12...she is now 23 years old.  

My daughter has also recently been diagnosed with Crohn's disease.  She was put on Prednisone for this condition and while being treated for Crohn's she has had slight regrowth...but once she was taken off the prednisone it has stopped again.   All other regrowth periods in her life have occurred without medical intervention or by using any other type of treatment...absolutely natural remission (which is very common with alopecia).

I am an advocate for Freedom Wigs as my daughter has worn them since she was 12.  I'll pop a couple of piccies up with her in her Freedom hair...it may be something you might like to investigate.

Rosy

Very nice Rosy! She is beautiful!
Bren

Thanks Blee...:)

Sounds like most went from AA to AU. I am diffuse with no AA. Also have severe burning and pulling sensation, it is awful! I have been taking iron for a few years, obviously is not helping. It is great hat your lashes are growing back! Let me recommend They're Real mascara by Benefit, it really maximizes! What has you wig experience been like?

Hi Jenbissness, my experience is much like yours. I have diffuse AA, not AA. I also had the severe burning and pulling sensation...sometimes it would make me cry. I barely get those sensations anymore, thank God!!! But, I do believe I'm on my way to AU. 

I'm glad to hear I'm not the only one with a small head! I find it difficult to order small sizes in wigs from catalogues. Special orders get expensive
Hello!
When I first noticed my hair loss I had several bald spots by the time I went to the doctor. Within a month I was bald. About 3 months later I found the first bald spot in my eyelashes and 2 months later all my body hair was gone. Whole process was about 6 months. I have grown some very blond short eyelashes and get injections for my eyebrows now. I am trying oral steriods now to see if that will help. I too had low iron which was related to celiac. Now that I am gluten free my iron had improved but no hair yet:(

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2021   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service