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Questions about diffuse Alopecia Areata

Discussion in 'Women's Alopecia Areata' started by Seal, Apr 26, 2012.

  1. Seal

    Seal Guest

    Hello, I have posted a few times but never asked questions before...there are a lot of info on Alopecia Areata but not a lot on diffuse Alopecia Areata. I have not been diagnosed with it because the derms I have been to refused to do a biopsy. A little background about my hair loss. Major shed in 2009 and 2010 all diffuse. Both sheds happened after stressful events...lost about 50% of my hair. Derms said it was TE. I also noticed I was losing eyelashes and eyebrows with the second shed. All pretty diffuse. I then started losing leg, arm, underarm, nose and pubic hair...I now have about 1/3 of the body hair I used to have...the hair loss down there is more patchy than the rest... :$
    Per my derms, all the blood work is fine even thyroid...
    My question for those who have been diagnosed, how did you get a diagnosis? I seem to regrow some of the eyelashes pretty fast but they also fall prematurely...If I indeed have diffuse Alopecia Areata, would steroid injections work? I have read that with Alopecia Areata you can have spontaneous remissions, is it also the case with diffuse Alopecia Areata?
    Thanks in advance!
  2. Sunflower25

    Sunflower25 Guest

    I think your post is right up my alley. :)

    I was diagnosed with diffuse Alopecia Areata back in '09/'10. I lost 90% of the hair on my head and body - all lost with zero growth over a six month period. I did have a biopsy done at the time, but all I got out of it was that my scalp was inflamed and my hair was not growing (in other words, it was useless). I did not have a stressful event that I could recall.

    From what I have read, diffuse Alopecia Areata should not be treated with steroid injections because of the amount of injections would need to be done. I was on oral steroids for something like 4 months in a step down plan - 60mg, 40mg, 20mg, 10mg. For me, it was hell. I lost weight (which was nice), had a rapid heartbeat every time I ate, and felt kinda manic sometimes. It messed with me, that's for sure.

    All of my hair came back 6 months after it started falling out. Well, 99% of it did. The "sideburns" that I always had never came back in - thankfully! haha

    I went 3 years without an issue. I now have a Alopecia Areata "spot" and some receding behind my right ear.

    Have you had a ANA test done to check for autoimmue? Mine came back as negative though - so I'm not sure how good it is for Alopecia Areata.
  3. Seal

    Seal Guest

    Thank you for your response...I have been using Rogaine for about a year now and have had some regrowth with that but nothing compared to what I had. The last derm I went to, diagnosed me with TE and Androgenetic Alopecia (based on the receding hairline). He looked at my scalp and said he could not see any exclamation point hairs to point to Alopecia Areata. I showed him the ridges on fingernails and he said they were beau's line from the TE. He said that in Alopecia Areata the problems are in the nail matrix...I had those lines for a while now...He also said that the body hair loss was probably due to thyroid...but the tests came back normal for that. I had ANA done 3 times and all came back negative...I just don't know where to go anymore...I just wanted to get some diagnosis so that I could know what I am dealing with... :lost:
  4. Sunflower25

    Sunflower25 Guest

    I hear ya, it sucks.

    I never had the exclamation point hairs either.

    I had issues with my fingernails for years before the hair loss started.
  5. Vanny

    Vanny Guest

    I've kept my diffuse Alopecia Areata aesthetically "manageable" for about a year now using the Kenalog injections (steroid). Meaning that it's not so bad I've had to start wearing wigs or anything like that and looks pretty good. I've had to switch around my part and I need bun filler or clip-ins to do anything other than wear it straight and down though.

    The steroid injections are the ONLY thing that's worked for me to keep this at bay. It didn't "fix" the problem, but in the spots were I'm injected a good amount of hair does grow back-- enough that it looks almost normal afterward. Unfortunately, other areas that haven't been injected start losing hair so it becomes a cycle.

    I started doing the shots every 2-3 months at first, and now I do them every 4-6 weeks.

    The good news is that in the last month I've seen a sharp, DRASTIC decline in my shedding. I changed my routine to the following and it seems to be working:

    -2 caplets of Sundown Naturals Hair, Skin & Nails a day
    -4000 mg of Sundown Naturals Garlic tablets a day
    -5000 mcg of Sundown Naturals Biotin capsules a day
    -10 mg of Nature's Bounty Melatonin a day
    -Avalon Organic's Biotin B-Complex Thickening Shampoo & Conditioner
    -Daily application of Mega-Tek on dry scalp
    -Twice weekly Mega-Tek application on wet scalp for at least 5 minutes.

    I take all the oral supplements before bed now, rather than in the morning. The shampoo & conditioner I mentioned were recommended to me by the nurse practitioner who does my injections and you can find it at Whole Foods. It's free of parabens, harsh preservatives, grapefruit extract, sulfates, and artificial colors and fragrances. It's also 70% organic. My hair had a thicker look to it after the first use.

    I'm pretty sure that the Mega-Tek and the Garlic are largely responsible for my decrease in shed. They're the newest addition to my routine.

    By far though, the steroid injections have been the best at keeping me from going bald. The other stuff is helping me re-grow.
  6. Seal

    Seal Guest

    Thank you both for the replies. I was just wondering how you got your diagnosis Vanny, did you get a biopsy to confirm Alopecia Areata or did your doctor just go by your history? Did you regrow any of your body hair? Did you get any spots or is it still pretty diffuse? Did you notice any nail changes? Did you try Rogaine? Do you still go through shedding phases? Any family history of hair loss or autoimmune disease? Sorry about all the questions but I am just trying to figure this out... ;)
    I have been using Rogaine but I have not seen much regrowth from that. My loss was pretty diffuse but the hairline and the top of my head seemed to be worse than the rest...I am taking Biotin and iron, I will try the shampoo and conditioner you mentioned. I have never tried the injections since I haven't been able to get a diagnosis... :(
    Thanks again.
  7. Vanny

    Vanny Guest


    I had to go to several different derms to get my diagnosis. The first told me I had TE, but I wasn't buying it because I had the little Alopecia Areata bald spots. The second said that I just had stressed-induced Alopecia Areata, which seemed a bit more accurate. Finally-- based on the fact my cousin developed the same thing as me, and that my overall hair density outside the spots was declining-- I was diagnosed with diffuse Alopecia Areata based on the genetic link and the doctor's observations.

    They didn't want to biopsy me because my shed was pretty bad at that point. I had a lot of bald spots and they said that whatever is biopsied doesn't grow hair again.

    I have both spots and diffuse loss. The spots are easier to handle because they directly inject them with the steroid shots and they re-grow a good amount of hair. The diffuse loss has it's ups and downs.

    I have regrown eyebrows by being injected directly to the face with the steroid shots. My eyelashes haven't re-grown, but they seem to shed less once I started using Revlon's Grow Luscious Mascara, which has some sort of nutrition growth serum in it.

    I have had no nail changes, but I have had changes in my teeth. I have chipped several teeth during the times where my shed has been at its worse, but I don't know if it's a connection or a coincidence.

    I tried Rogaine for 6 months with no improvement whatsoever, so I gave it up. The only thing that seems to stimulate any growth is the Mega-Tek. I still go through shedding phases, though my shed has so drastically decreased in the last moth that I hope I'm finally in remission.

    As I mentioned previously, my male cousin has diffuse Alopecia Areata as I do. My father has male-pattern hair loss. My grandmother, his mother, had diffuse overall thinning, but I'd always I assumed it was just regular hair loss that comes with age. Since she's passed, there's no way of knowing. His father had no hair loss whatsoever until the day he died.

    My mother has thick, beautiful, long hair down to her waist and she's nearing 60. I think, if anything, the genetic link for the hair loss must be from my father's side, since he is balding and my cousin who has the same condition as I is from his side of the family. My father also had hyperthyroidism, which was treated via operation in his home country when he was young.

    I hope you see some changes with the Rogaine, but I certainly did not. If you have no luck with it, I highly recommend the Mega-Tek. If you search the threads here you'll find a bunch of info on it.

    If you're having trouble being diagnosed, you may just want to shop around for derms. Unfortunately, not all derms are created equal. If you have the round little bald spots distinctive to Alopecia Areata though, they should have no problem diagnosing you with at least Alopecia Areata. If it's just diffuse, which is how mine started, it may be a little tougher since derms assume it's just TE. You may have to do some convincing where you insist that the doctor treats you with the injections. One round is not going to kill you, and if you react positively then you're one step closer to diagnosis.

    Good luck, and let me know if you have any more questions :)
  8. Seal

    Seal Guest

    Thank you for the response! I guess yours was easier to diagnose based on family history and that you got the Alopecia Areata spots. I have been having this diffuse loss for almost 3 yrs but no Alopecia Areata spots...I have been to 3 derms and 3 physician's assistants, they all said TE and only the last one said TE and Androgenetic Alopecia...That are not a lot of derms in my area and it is pretty tough to get an appointment with the ones available...
    Where do you get the Mega-Tek? I am glad your shed is down, mine is too but I seem to have seasonal shedding that happens every summer... :(
    Thanks again!!
  9. Sunflower25

    Sunflower25 Guest

    I had no spots with the Diffuse Alopecia Areata diagnosis. I can attach photos of mine later if you would like, then you can compare to your own hair. Let me know.
  10. Seal

    Seal Guest

    Thanks Sunflower 25. I have never seen pictures of Diffuse Alopecia Areata, so it would be great if you could share it so that I can compare it to my own hair.
    Thanks again! ;)
  11. Sunflower25

    Sunflower25 Guest

    Sorry its been so long, I kept forgetting to post!

    The three photos were about 3 months into the hair loss. After that, I couldn't stomach taking any more photos. I ended up with the shape of a 7 on the top of my head being left before it started coming back in.
    [attachment=0:9ln3yzvq]2009_3_20 006.jpg[/attachment:9ln3yzvq][attachment=2:9ln3yzvq]2009_3_25 003.jpg[/attachment:9ln3yzvq][attachment=1:9ln3yzvq]2009_3_25 004.jpg[/attachment:9ln3yzvq]

    Attached Files:

  12. oabab

    oabab New Member

    Sep 19, 2018
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    Hello! I kn it's been a while but i am going through the pretty much the same, without biopsy. TE and FAA i am told. But i do have hashimoto and i would like to be sure by having a biopsy. How are you in the meantime? any success?

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