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Is there a point in going to a dermatologist? Have had Alopecia since I was 4 yrs old

Discussion in 'Women's Alopecia Universalis & Totalis' started by kalo, Jan 15, 2016.

  1. kalo

    kalo New Member

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    I'm 25 years old and I've had alopecia since I was 4 years old. I guess now I would fall under Alopecia Totalis because I have no hair on my head.

    Is there a point in seeing a dermatologist? I went as a child but my hair would come back in then immediately fall out once treatment stopped. I've googled around and it just seems like there's random claims here and there of treatments working for someone, but no real solid treatment for Alopecia. Has anyone had any success around here? Is there anything a dermatologist can do for me, or should I just save my money?
     
  2. dancer

    dancer Experienced Member

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    Hi

    I have been Alopecia Universalis for 39 years, my derm wrote me off years ago and told me I would probably never get my hair back, so I live in hope a cure will be found not just a treatment, no treatment has ever worked for me I gave up in my teens . It is helpful to visit the national alopecia areata foundation for more information too.

    There re has been a lot of research in recent years much of it has been discussed here. There has been trails of a new drug xeljanz which has given some patients regrowth. However it is a powerful drug so with that there are serious risks too. It has not been passed by the European commission as they decided that the risks out weighed the benefits. However there are many patients been prescribed it in the US and they are seeing good results on the whole. As of yet they do not know if the treatment is stopped whether the hair remains. It is a treatment not a cure.

    personally I wouldn't take it, I wouldn't risk my health for my hair as I aleady have enough health problems but each individual needs to make that decision for themselves. If you want to read up on all those taking it go to alopecia world,I would also read up about all the side effects that could be serious, the risk of cancer being one of them

    nice to meet you :)
     
  3. kalo

    kalo New Member

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    Thank you so much for your reply! I live in hope of a cure as well - I can't imagine what it would be like to have my own hair one day. I have thought about going back to dermatologist over the years, but I'm afraid I will just get my hopes up for nothing. I took steroids as a child and I ended up getting so bloated, plus I couldn't be on them for long due to the long term use affects.

    Columbia University (which is commutable for me) is actually doing a trial for Xeljanz and it's currently open for enrollment.. I've thought about applying, but the side effects do alarm me. I honestly do not think it is worth it for me either. I would love to have my own hair, but like you I do not want to do it at the expense of my health. I'm interested in the Ruxolitinib trials because the side effects seem fairly mild and it's been used for so long for treat other diseases, but I don't know what kind of results people are getting with that drug.

    Nice to meet you as well! I will have to write up an intro on the intro section, hehe. :)
     
  4. dancer

    dancer Experienced Member

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    I also read that a 17 year old girl had regrowth with a topical form of the drug, the side effects are suppose to be lessened.
    I haven't read too much about ruxotinib trails either

    Just wondered if you wear wigs head overs etc or are you Alopecia Universalis natural :)
     
  5. kitkat09

    kitkat09 New Member

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    I still go to a derm, I started going when I was 21 (which was when I got my Alopecia Universalis diagnosis) and I had Alopecia Universalis when I was 8 yrs old. I still go to mine because I also have a little bit of vitiligo and other things beside my Alopecia Universalis. I had one major regrowth that gave me 3 patches of hair when I was 23 for a few months and went away. I've been wearing my wigs daily since I was 18 and my eyelashes are just doing weird things (my top left is all gone, my bottom left is 60% sparse but still there, top right is there but half as thick, and bottom right is 90% gone), it's so annoying! So since August i have been wearing eyelashes everyday also. My eyebrows are 25-40% there on both sides (still have to draw and fill in and blend).

    Every treatment will have risks. To be honest I am at a point I'm ok without hair (I mean why would I want body hair? lol), but I don't walk out without a wig unless I'm at home. I have tried one round of the kellog shots on my hairline and I already see the depressions of where the needle was on my head. I'm not doing them anymore. I am told to try to continue the protopics ointment for my scalp though. I see baby hairs on places I haven't had before but no actual growth.
     

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