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Went to the derm today

Discussion in 'Women's Alopecia Areata' started by maisydaisy, Jun 13, 2006.

  1. maisydaisy

    maisydaisy Guest

    Well, I went back to the dermatologist for my Alopecia Areata today. This is my 2nd visit with him (although I've been to a lot of other doctors/derms). This guy is a National Board Certified specialist in hair disorders, so I expected a lot from him. The first time I went, he prescribed Olux and told me to get a wig (how HELPFUL!).

    Anyway, when I went back today and removed my wig, he was shocked by how much hair I'd lost. I told him the Olux hadn't worked and he agreed. He told me I'd lost too much hair to get cortisone injections on my head (I literally only have about 10% of my hair left...about 2 little tufts). What gets me is that he seemed in favor of the shots this time, like if I hadn't lost so much hair, he'd give them to me. And like he REALLY didn't expect me to lose this much hair. I wondered why he hadn't taken me seriously during my last visit (when I still had about 50-60% of my hair left) and had practically BEGGED him to do something, anything, to help me keep the hair I had left. On the first visit, he'd told me cortisone shots could suppress my immune system and so weren't a viable option, yet today... not only did he seem in favor of them as a scalp treatment, but he also injected my eyebrows with them!

    On top of that, I asked him if I should even bother with the Olux since it obviously hasn't been helping. He just said, "Ehhh...try it for another month and if it doesn't work, just give up on it."
    That seemed a very fitting microcosm for his treatment method...try something half-assed and if it doesn't work, just give up!

    I'm very upset because I feel like maybe if he'd taken me seriously last time, I could have gotten cortisone shots and not lost all my hair. I wouldn't be sitting here in a wig right now!
     
  2. Guest

    Guest Guest

    Hi maisydaisy,

    Sorry to hear about your derm fiasco - I've found they are totally useless, clueless, and really don't give a fig about hairloss. Now if you came in wanting some botox injections, skin resurfacing, etc... that's when their eyes light up thinking about the profitability. Hairloss is a bummer since they no so little about it and it's not controllable.

    I was reading over your previous posts and noticed you're a teacher. So am I. Just wonder how you handle the hairloss in the classroom. When mine started it was an absolute nightmare for me - every session I had less hair and it became more difficult to try to conceal it. I'm off for the summer so I have a bit of peace in that regard, but don't know whar I'll do in the fall. I know I have to get a wig to get through.

    Could I ask you what kind of wig you're wearing and do you wear it all the time? How are you handling the whole situation - it seems like you're extremely in control and dealing - opposite of me! I'm terrified, upset and physically ill at the whole ordeal. I want my blonde hair back as well - and it's not happening. I'm going on a year now.

    Hope to hear from you soon,
    53
     
  3. IONLYWISH

    IONLYWISH Guest

    Hi Maisydaisy,
    I have Alopecia Areata also. It's my understanding that the cortizone shots do not stop your hair from falling out. The shots only work at reducing inflammation and promoting regrowth. The steroid creams don't stop the hair from fallling out either - they just promote regrowth. Like the other Alopecia Areata ladies say "it just has to run its course." Hopefully you will see some signs of regrowth soon. Good luck.
    Twins
     
  4. Karen

    Karen Guest

    Hi Maisy

    Your hairloss is very similar to my own story. Mine started in May 2005 - by August it looked like your explaining now. I remember going back to the derm and she wouldn't give me the shots either. There was just too much loss and I agreed. That's when I gave the iodine a try. For a month - November - I just got a cotton ball and swiped my head. I don't know what exactly put my alopecia into remission, but I feel that the white iodine helped. Because after that, my hair just started to grow. I know how you are feeling right now because I felt the same. Maisy if it's still active you would have lost your hair no matter what that derm did - no matter what creams, how many shots, how much rogaine -- whatever. What needs to happen is to go into a spontaneous remission and the only things I know of - white iodine, anthralin and I think there are others, but I don't know of them. Maybe you could try calling him to see if he would at least try something on this course. See - they just know so little about it and I don't know what's wrong with all of them just saying I don't know then at least your hopes wouldn't be crushed. That's the part I liked so much about my derm - she just came out and said I don't know. Let us know how it works out and I will keep you in my prayers.
     
  5. 53balder

    53balder Guest

    Sorry I forgot to log in - the Guest post is actually mine - 53balder
     
  6. maisydaisy

    maisydaisy Guest

    Thanks, guys. It makes me feel better to hear that my hair couldn't have been saved. That's what I had thought too, but the way the derm talked, it sounded like he thought maybe this COULD have been prevented, which would make it about 1000x worse for me.

    Karen, he did offer me the Anthralin treatment today, as well as cyclosporine (I think), but to me, the side effects are worse than the disease. Anthralin is designed to create an allergic reaction (from what he said), and I already have extremely sensitive skin (just wearing a wig gives me a rash unless I line it in cotton). And with the cyclosporine, he said we'd have to watch my kidneys b/c the treatment can compromise kidney function. I think I'd rather be (as Gorgi says) "a cute bald chick" than a chick with hair and kidney failure! My health is just more important.

    53, I honestly don't know how I'm going to handle this with my kids in the fall. I'm considering just being open with it so I don't have to worry about being outed. I guess we'll see when August comes around.

    I currently wear Alan Eaton's Beau, a synthetic style. I wear it whenever I'm in public but not when I'm home. Like I mentioned above, I have sensitive skin and the synthetic fiber irritates me and causes red bumps if I wear it too long, so now I'm shopping for a nice human hair style.

    I'm really sorry to hear about the pain you're going through, 53. Thank you for your comment that I seem in control. I really try, and I find that being open about my condition really helps. It's amazing how nice and sympathetic people (other than dermatologists, of course :) ) will be to you if you tell them what you're going through. But of course I have my total freak-out moments as well. For example, when I was driving home from the derm today, I opened up the letter he'd given me for my insurance company. It detailed my disease then requested they help me pay for a wig that I could use "while being treated." I simply couldn't help laughing out loud! So, "give this a try for a month and if it doesn't work, give up on it" is this guy's idea of treatment! It was so funny, and at the same time so sad to me that I was laughing and crying hysterically at it. Like I said, a freak-out moment.

    Anyway, thanks again ladies. I'm learning not to rely on doctors for comfort, but instead on people who really know what this is like.
     
  7. redclaire

    redclaire Guest

    {{{Sara}}} In my experience doctors are the anti comfort. If it weren't for the ladies here I'd be a real nutcase... instead I'm just the same pseudo nutcase I've always been.
     
  8. sawyersmom

    sawyersmom Guest

    Sara, I also saw someone who was highly trained back in April. Hell, he was the head of the derm dept and ran his own hair clinic. anyway, he asked me if I wanted my hair to grow back or not. then fussed at me for following the treatment my derm( his employee) gave me. anyway, I guess what I am trying to say is that I was disappointed as well. I dont have much faith in doctors right now either, hon.
     
  9. at_a_loss

    at_a_loss Guest

    You are correct in your assumption that the shots wouldn't have helped... they are definitely for stimulating new growth at best and would not have saved what you were bound to lose with Alopecia Areata anyway...

    I agree with every other Alopecia Areata woman on here... let it run it's course...
     
  10. Joann

    Joann Moderator

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    (((( Hi Sara))))

    I just want to add my voice to everyone elses. With Alopecia Areata the hair that is going to fall out will so don't feel that you should have done more to save it.

    My experience with derms on the whole has not been a good one. I did have one who I liked and who was honest with me. Unfortunately she was away on maternity leave when my Alopecia Areata got very aggressive. Her associate was a different type altogether. When half my hair was gone she is the one who recommended the DCP treatment to me. It is a topical treatment that works on the same principle as the anthralin in creating an allergic reaction so the immune system is diverted from attacking the hair follicles.

    Like you I have always had extremely sensitive skin. I have posted my story with this treatment on this forum. Here is the link for anyone who would like to read it. This treatment backfired on me in the worst way possible . I am walking around now totally comfortable about my bald head but devastated as to how my arms and legs look.

    http://www.heralopecia.com/forum/viewtopic.php?t=3113

    Gorgi has tried the cyclosporin and has also posted her experience with it. Yes her hair grew back for awhile but it's gone again. Here is the link for that post:

    http://www.heralopecia.com/forum/viewto ... ght=#21264

    I know the feeling of wanting to try anything that will help you keep your hair & have it grow back. With Alopecia Areata we have to be careful and remember that the treatments available do not put the Alopecia Areata into remission. Often even when it all falls out it eventually grows back even without any treatments at all.

    Sara, I'm so glad that you have chosen health over hair. I was healthy but balding when I chose to do the DCP treatment. My health has not been the same since. No one will ever convince me that playing around with my immune system hasn't caused this. Now even the immunologist can't fix it for me.

    The possibility of your hair growing back is always there . I think you are handling everything so well. Take care. All my best to you. Hugs Joann
     
  11. maisydaisy

    maisydaisy Guest

    Thanks, Joann. In a blessed coincidence, I just happened to read your post a day or two before my derm appointment, and that was what made me decline his treatment offers. That's why it's so important we keep each other informed!

    xx
     
  12. Guest

    Guest Guest

    Too early...
     
  13. burtcat

    burtcat Guest

    I would say every derm is a little different, I have not really ever tried to fight for my hair. I have tried prednisone, shots in my bald spots and now I using lidex solution on my scalp. In actuallity there is no magic cure for alopecia at this time. The Dr's can only use a trial and error method, and really they can't guarantee your hair won't ever fall out again. Good Luck in your future sucess in finding a Dr that really cares and wants to help you.
    Katie
     
  14. New Girl

    New Girl Guest

    I hate to be one to kill the flow but my derm has been great.
    I was diagnosed in a matter of minutes back in March 06 and then she had me try the Olux for one month and told me to throw it out when I came back w/ no regrowth.

    We have been doing the monthly cortizone shots and it has been growing back great. Yes each month there are more spots but my derm finds them and put the shots there and next month there is hair there and we move on to the next spot.

    Yes the shots dont stop it from falling out, but it makes it come back, for me at least.
    I have one spot that you could really see very bad on the left side on my head and now after 3 months of shots you cant even see it anymore.

    I think you just need to get to the right Derm who will do anything, within reason or your comfort level, to get your hair back. I guess I was lucky that the first one I went to knew what it was and how to treat it and FAST!

    Thanks
    Kori
     

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