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New Person Here..minoxidil 5% Dread Shed

Discussion in 'Success Stories and Positive Outlook' started by sophrosyne110, Mar 8, 2021.

  1. sophrosyne110

    sophrosyne110 New Member

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    Hi everyone,

    Thank you for sharing your story with hair loss. My question is as follows, and forgive me if this is a frequently asked one.

    I've got both PCOS and Hypothyroidism, and I'm able to maintain a stable weight. As you can imagine, this creates significant amount of hair loss.

    During the pandemic (earlier) I regrew significant amounts of hair back with Viviscal, but it seemed to peak and not do much. I went to a derm and she mentioned I should be using 5% minoxidil to see significant results. So I started using it and really committing to it. I'm on day 34 and the dread shed seemed to wind down, but it didn't stop. I'm losing a LOT of sleep over this and I'm afraid I'll be basically bald by the time things open back up (I'm expecting around August). Here's my routine;

    - Vitamin Code multivitamin that I take 2x a day
    - Viviscal Pro 2x a day
    - minoxidil 5%, part by part everyday.
    - standard medications.

    I've got an appointment with my endo coming up, but here are my questions:
    1. How long did you experience this dread shed? All I find online that is that it starts somewhere between week 2-8 but nowhere on how long it lasts.
    2. How long did it take for you to see results?
    3. Did you also dermaroll? I've got a 1.5mm one but I"m not sure how many times to roll in a week. I'm also afraid that I'll just be cutting more hair by accident instead of creating enough superficial cuts.

    I'm having a hard time staying positive. Someone please help :'(
     
  2. thinhair1

    thinhair1 Member

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    Hi Soph,
    I haven't used minoxidil for a real trial, so I can't help you there. My understanding from this site is that the shed can last for months. But it seems ultimately people are happy they did it and get regrowth after white-knuckling it for the shed. I'm sure it's very difficult to watch more hair fall. I've heard that the shed is all "old bad hair" and that the regrowth will be nicer. Virtual hand-holding sent to you!!

    Also you may want to start Ketoconazole 2% shampoo a few times a week if you haven't already. It's an antiandrogen.

    I would urge you to somehow document your hair regrowth. Either photos that you take of your hair/scalp, or have the derm do it (I think that's ideal as they have better tools to do that usually, a better camera and also can see the top of your head while you can't).
    Our minds play tricks on us and we are notoriously bad at remembering what our hair looked like as time goes on. I fear that people get impatient and discouraged with treatments like minoxidil that take a long time to declare whether they are working or not. And then many people quit the treatment when it was actually working, or starting to work. Lots of people have had good results with minoxidil 5% once daily. One of the keys is consistency.
    There is apparently a test of the hair that can tell quite accurately if you will respond to minoxidil or not.
    Wonder if the derms are doing those tests?
    And if you are one of the non-responders I believe the addition of topical retinA or azelaic acid can sometimes convert non-responders to responders.
    With the derms would do more large scale testing of women with minoxidil, plus/minus additional topicals that could help the response rate.
     
  3. MommaBear79

    MommaBear79 New Member

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    Hi there,

    First let me just say that I understand what you are going through. As someone with androgenetic alopecia who has a daughter with adolescent androgenetic alopecia, I understand how hard it is to fight this uphill battle. It is definitely helpful to have support for this issue as there is a psychological component to hairloss that is very difficult.

    I have a lot of experience with minoxidil. I have been using it since the age of 17 (I am now 41). I also just started my teenage daughter on the 2% formula. I can tell you that although the shedding is distressing, it is also an indicator that the minoxidil is working. Everyone is a little different but day 34 is still very early so I would suggest that you stick with it. It takes at least 3-6 months to see results from minoxidil. The hair that you are shedding will grow back. Just give it some time.

    The other thing I wanted to mention is spironolactone. Ask your endo about this medication. My daughter’s endo just started her on it. I did some research and sounds like for women with hairloss due to PCOS, a combination of birth control, spironolactone and minoxidil seems to work very well.

    Best of luck to you!

     
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  4. thinhair1

    thinhair1 Member

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    Oh MommaBear79, I don't want to hijack this thread but I'm so happy you replied. I too have Androgenetic Alopecia diagnosed at age 30 and I'm very concerned my 14-year old daughter may be beginning to thin. She had a derm appt yesterday and the pediatric derm did not feel her hair was thinning, but given my very very strong family history of female Androgenetic Alopecia and my husband's as well, I feel it's only a matter of time. And I'm expecting to see the beginnings of thinning soon. To be frank, I've been sort of freaking out a bit, just like I did 20 years ago when I first realized I had Androgenetic Alopecia and that it was a lifelong condition. I've been waking at night anxious and trying to keep myself from staring at her hairline.

    All this is to ask if you might be willing to share a little bit about how you are coping with your daughter's thinning, and how she is coping with it herself. Maybe we could start a different thread, or maybe we could PM? I'd be grateful for any tidbits if you're willing to share. Thank you.
     
  5. MommaBear79

    MommaBear79 New Member

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    Hi thinhair1! I’m glad you saw my reply. I decided to post directly to the thread only because I’m hoping this post will be helpful to you as well as other people who may stumble upon it. I hope the OP doesn’t mind!

    So great that the pediatric derm didn’t think your daughter is thinning yet, but I completely understand why you would be anxious. I first took my daughter to a pediatric derm as well and he diagnosed her with androgenetic alopecia. He told me to start her on 2% minoxidil. I didn’t stop there though. I took her to a pediatric endocrinologist who diagnosed her with hirsutism and said that she might eventually develop PCOS. After running bloodwork and realizing the level of my distress, he offered to put my daughter on 100 mg of spironolactone (50 mg twice a day). He said that birth control would be very helpful for someone like my daughter but he couldn’t prescribe it to her yet because it would stop her from growing and she is still not at her adult height. The plan is to start her on the pill around the age of 15, when she is done growing. Based on what the endo said, and also what I have read online, the combination of birth control, spironolactone and minoxidil should be most effective when used together.

    It has been almost a year since my daughter started using spironolactone and minoxidil and I do see some new hair growth but I also see a lot of miniaturized hair. It’s hard to tell at times which way the hair is going - if it’s previously healthy hair that is becoming miniaturized or if it’s new growth.

    I have to say that as hard as it was for me to accept my condition, it has been so much harder to observe it happen to my daughter. It might be because my daughter’s hairloss started much earlier and is much more aggressive than what I experienced. I didn’t start noticeably thinning until I was 16 and my daughter started thinning at 11. I keep wondering if maybe I too was thinning earlier, but my mother, who doesn’t have hairloss, just wasn't as hyperaware as I am. My daughter seems to have lost 1/2 of her total hair in the last couple of years. As you can imagine this has been really difficult for me. Surprisingly my daughter doesn’t seem to be at all distressed at this point about her hair. She is only 13 though so I wonder if it’ll eventually become an issue. I also have a 9 yo daughter and I am watching her like you’re watching your daughter. Her hair recently started getting more oily, which is what happened to my older daughter when her hairloss began so now I am very worried about her as well. I haven’t decided if I need to take her down the same road as my older daughter yet.

    Feel free to respond or PM me if you have any questions. I’m happy to help

    QUOTE="thinhair1, post: 261733, member: 171350"]Oh MommaBear79, I don't want to hijack this thread but I'm so happy you replied. I too have Androgenetic Alopecia diagnosed at age 30 and I'm very concerned my 14-year old daughter may be beginning to thin. She had a derm appt yesterday and the pediatric derm did not feel her hair was thinning, but given my very very strong family history of female Androgenetic Alopecia and my husband's as well, I feel it's only a matter of time. And I'm expecting to see the beginnings of thinning soon. To be frank, I've been sort of freaking out a bit, just like I did 20 years ago when I first realized I had Androgenetic Alopecia and that it was a lifelong condition. I've been waking at night anxious and trying to keep myself from staring at her hairline.

    All this is to ask if you might be willing to share a little bit about how you are coping with your daughter's thinning, and how she is coping with it herself. Maybe we could start a different thread, or maybe we could PM? I'd be grateful for any tidbits if you're willing to share. Thank you.[/QUOTE]
     
  6. thinhair1

    thinhair1 Member

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    Thanks MommaBear, that is very helpful. I'm very glad that your daughter is not distressed about her hair loss. I know that I need to be a good role model for my daughter when it comes to this subject. Concerned but not enmeshed. I wonder if it is particularly hard due to guilt that I feel for passing this gene on to her? I know I couldn't control it, but somehow I feel responsible. Do you struggle with that too?
    It sounds like you have your daughter on a good regimen. Did the doctors recommend Nizoral 2% shampoo for your daughters?
    The peds derm didn't seem all that interested in that particular idea. I do wonder, though, if some of these treatments, if started early, could curb hairloss. I don't know.
    There was also a study out that showed 2% ketoconazole cream applied topically nightly helped grow hair almost as well as minoxidil. I'll send you the reference if you like.
    Thanks again. Your daughter is lucky to have you looking out for her.
     
  7. thinhair1

    thinhair1 Member

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    The more I read about scalp inflammation being closely associated with pattern hair loss, the more convinced I am that scalp health is paramount. Getting rid of that fungus Malasezzia seems imperative.
     
  8. MommaBear79

    MommaBear79 New Member

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    The doctor didn’t recommend the
    I try to be a good role model as well, but I’ll be honest - it’s not always easy. My girls frequently catch me looking at their hair and call me out on it. I too read about ketoconazole and started my older daughter on the 1% Nizoral about 6 months ago. A few months ago when I noticed that my younger daughter’s scalp became oily, I started her on it as well. I read about the 2% formula being more effective, but thought that I requires a prescription. I have a follow up appt with the peds derm in a few months and was planning on asking him. Though I’m not sure he would agree to it. He didn’t seem willing to give her anything other than minoxidil. Maybe I need to find another doctor who is willing to think outside the box a bit.
     
  9. thinhair1

    thinhair1 Member

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    Yes, I hear you. My daughter calls me out too! I get my ketoconazole 2% shampoo from a Canadian online pharmacy. It's over-the-counter in Canada, so no prescription needed. I think it's called Northwest Pharmacy in BC.
    I do notice a bit of an in-the-box attitude from our peds derm. Not dismissive, exactly, but not hugely interested or concerned. She does not seem terribly interested in the articles I brought her regarding ketoconazole or Omega-3's.

    She said that the "hair test" that is shown in research to be able to predict whether one will be a responder or a non-responder to minoxidil is NOT ever used in clinical practice and was not available to us. She said we "could use minoxidil if we want" which was not really helpful. When I asked if she could measure hair diameter to see if there was the beginning of Androgenetic Alopecia she said Androgenetic Alopecia is a clinical diagnosis and intimated that "you know it when you see it". Well, I'd prefer to catch it earlier than that.

    I'm a research-type person and I sure would like to see studies done on kids with a family history of Androgenetic Alopecia. Studies that look at their hair during puberty and put them in research groups, perhaps trying ketoconazole shampoo, plus/minus minoxidil and those types of things to see if Androgenetic Alopecia can be PREVENTED in these kids. Rather than waiting for the obvious signs of hair change. It's harder to reverse change than to prevent it, I would think.

    There is a study that shows 2% ketoconazole "emulsion" applied to the scalp and left on every night and washed off the next morning was quite effective (as much as minoxidil?) in keeping and growing hair. I think this is quite impressive. Especially if there are no side effects. A mess on the head at night to be sure, but maybe cover with a soft cotton turban at night and just wash the turban daily?

    https://biomeddermatol.biomedcentral.com/articles/10.1186/s41702-019-0046-y

    The study was done on females with average age of 29. There are photos included in the study that are very interesting. It appears from the results that many were able to improve their Ludwig category by at least one level. So if someone is Ludwig 1 they could theoretically go to Ludwig 0 which would be great.
    The study didn't show what happens with minoxidil used together with ketoconazole. For instance, how about the keto overnight, then wash hair in morning and apply 5% minoxidil? Seems like that could work great.

    I am also urging my daughter to take a tablespoon of Barlean's Omega 3 Swirl daily. The mango peach flavor is great. She resists it for some reason. Zinc gummies taste great and she'll take those.

    Anyway, I do think out-of-the-box thinking is important and that I will have to be pushing for that for my daughter. I'll stick with things that seem to have little risk like the Nizoral shampoo and some dietary changes. Maybe pumpkin seed oil here and there. Scalp massage may actually work too, I have read, as well as the laser comb.
     
  10. thinhair1

    thinhair1 Member

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  11. MommaBear79

    MommaBear79 New Member

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    Thanks so much for sharing all of this information with me! I finally had a chance to read through the studies and they sound very promising. I will definitely order the 2% keto shampoo. I also want to try the keto emulsion (on myself first and then possibly on my daughters) but not sure that I’ll be able to recreate the emulsion. I have also read good things about castor and rosemary oil applied topically. The only issue is it is hard to wash out so doing it nightly would be difficult.
     

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