Alopecia...Exausting, depressing. Keeping the faith.

Posted , 6 users are following.

This is to whoever out there is going through the same thing. It has been very difficult! Crying, depression, unsolved answers as to why, frustration, and everyting from trying anything and everyting to make it better. The first thing I noticed in this post from the original writer is about the tingling and feeling of tiny creatures crawling EVERYWHERE on your scalp. Almost unbearable  to where you want to rip your scalp apart. Noone can get this unless youve experienced it. It's Unbearable!!! Ive used creams, Shampoos, anything from cocnut oil, tea tree oil, to frankinsense, and anything that was topical from my dermatologist... even had blood work done. Nothing seemed to work. And most frustrating, my blood work came back normal and the doctors couldnt find anything wrong. So today I had a prednisone shot, and Im on prednisone pills, including Xanax for the anxiety I am going through.  And YES...stress is a huge culprit of Alopecia. Tomorrow I visit the dermatologist to have a skin bioposy. Im trying everything!!! I do not want to end up bald. And I want to end this horrible unknown thing that is going on.  I also have to comment again on the original person that wrote this post...I completely GET IT!. I am a very confident woman. I am very social and outgoing. Ever since this has happened, that has all dissapeared. And...In the end, I may have to shave my head and sport a new nose ring,  on top of super cute scarfs and bandanas to make myself feel better. But, Im ready to take this on if be. And as far as friends...anyone who is going through this, surround yourself with true friends who don't give a #$@Q#% and love you no matter what!!! Keep telling yourself you are beautiful and keep the faith!!!! Life could be so much worse. Like losing family members and close friends. Stay healthy and I hope this helps.

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10 Replies

  • Posted

    An addition to my post above...I wanted to show what has happened in just 2 months. 

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    • Posted

      Hi Rshell,

      I'm sorry to hear of your hair loss.

      My problem is that I have been gradually losing my hair since taking prednisolone a year ago. I have to take the steroids for a different Illness called sarcoidosis however over the last 4-5 months my hair has thinned and coming out.

      I wished my time for the steroids would come to an end now because of the awful side effects you get from them, but they are working for the main reason I'm taking them. Everyone is different asin reactions to medication but I hope this doesn't make your hairloss worse as steroids weaken your immune system.

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    • Posted

      I'm sorry as well to hear about you having sarcoidosis. Both my family doctor and dermatologist recommended  prednisone. Also Doryx. I've read some side effects of Doryx  and that does include hair loss. So ive been relunctant to start taking it. The prednisone I have to say has stopped all inflamation. Im only on it for 2-3 weeks.  Maybe so my hair can actually start growing back without all the redness and inflamation. So Ill cross my fingers and  I hope everyting works out well with yout too...

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    • Posted

      Hey, well all you can do is try I hope they work out for you I was on a high dose of 35mg a day for at least 5 months then the last 7 months been weaning of them since.

      I spoke to my specialist about it amd was told that my hair will get back to normal once I'm finished on the steroids however I have had a set back and it seems my body needs the steroids to keep the sarcoid at bay.

      I wish you luck 🍀.

      Are you in America?

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  • Posted

    This is an old post but I'm hoping you will still read it.

    When I started losing my hair I too was devastated. Your description of how you feel now is exactly how I felt 20 years ago when my hair started falling out. At the time I had long hair. It was a little past my shoulders and I started with a small bald spot at the back of my crown of my head the size of about a half dollar. It was actually my hairdresser that found it. By the time my hair was falling out I had almost no hair left. I did decide to go ahead and shave my head not completely bald but a burr cut. This made it simpler for me to put on the medicine on my scalp and I simply wore a hat or a wig when I was out in public. Because I had lost so much hair they did not feel they could give me the injections in my bald spots which is one type of treatment. So they started giving me injections in my rump. After repeated injections over the course of I don't remember how long my hair started to come in. Oddly enough it came in white and I have brown hair. So here I was with hair with brown fuzz and white blotches. However the white hair eventually turned brown and match the rest of my hair. Today my hair is very long and goes way past my shoulder about the middle of my back. I still lose hair in patches but because I have long hair it typically covers the patches and I can go in and get injections in my scalp and my hair will grow back. The biggest patch I've had since I've had the long hair was as big as my hand and it was on my left side right behind my ear and went all the way down to my neck and it was still not visible because I have long thick hair.

    My one big happy is when a bald man tells me that at least I have some hair. A woman being bald it's just not the same as a man. So a man should not compare himself with me.

    I hope you know that there are solutions out there that will help grow your hair back out. It may take a combination of treatments and it'll take time but be patient and try not to get too depressed over it.

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    • Posted

      hi - i am going through so many despairing feeling and anxieties - i think i have brought on my alopecia through stress - as all my blood work came back negative - how do you keep positive about this - how do you carry on with day to day management - how do you keep the anziety at bay without more meds - i have no idea, so confused in what vitamins to try - i just feel a complete wreck at the moment - trying to sustain a new relationship - a new job coming up - i just feel i am in a nightmare - hope you read this and can offer some comfort
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    • Posted

      First you must accept that your stress did not bring on you alapcia. It is a disease. An autoimmune disorder. It does not show on any blood work. Yes stress does make it worse but it didn't cause it. Are you seeing a dermatologist for it? You need to. There are so many treatments now a days that help to grow the hair back. And if you Facebook the is a great group called alapcia arrays. They are very supportive. You should join them. It is a closed group so anything you post there is private and will only be seen by the group. Please feel free to email me on here or friend me on Facebook. I am Kathleen Kaiser and I'm the one that says I'm with kaiser pest control. Do you know how to email from here? Look to the left of the comment box, the you will see my name and below that the is an envelope, click on that to email me.

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  • Posted

    I lost my hair ten years ago when my dad died. Recently I found out that my husband was cheating on me after nearly fifty years of marriage, and I have now divorced him. Strangely my hair has started growing back! Just hope it doesn't fall out again

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  • Posted

    I recently went to have MORE blood work. All my tests came back good so that in itself is frustratng. But I have some hope now due to a persistant "female" doctor. (Maybe she can relate more than male doctors) Anyways...after digging deeper into specific blood tests, she had me tested for testosterone. Even though us women are made up of mostly estrogen, and men mainly testosterone, it is a vital horome in us. A normal range of testosterone in a women is 30 to 95 nanograms per deciliter for women (men 300-1200). Different levels vary with age of course and I am 49 pre menopausal. But my blood test came back with a 6. Extrememly low! If you google very low testosterone in women, it is very interesting. And one of the main effects is HAIR LOSS! and the ability to grow it back. I dont know if that is a contributing factor as to what Im exeriencing, but it certainly gave me hope. Horomone therapy hopefully will help. I have to give it to my female doctor for being so sympathetic and persistant. Now she will have me rub testosterone cream on my inner thighs. She said this will defineately make my hair grow. So maybe anyone that is dealing with this horrible hair loss thing, have your testostosterone checked out. I might help and give some peace and hope smile

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  • Posted

    That's interesting about your testosterone level and using the testosterone cream to rub on your inner thighs. That made me think of something for you to put in back of your mind for when you reach menopause. There is something called bio-identical hormone replacement. You should consider that to help you. A compounding pharmacy creates a thing called a trochee that you put between your cheek and gum and it absorbs in your system that way. The trochee is made up of a mixture of testosterone, estrogen and progesterone. The percentages of each are made up passed on tests run like your doctor did for your testosterone level. So the compounding pharmacy will get an order from your doctor saying to make your levels of testosterone a certain amount and your estrogen a certain amount and your progesterone a certain amount. The reason why this is important is because it will make you feel 100% better then just taking estrogen replacement. And in fact the testosterone cream is not enough on its own the doctor can order these trochees with just testosterone in them.

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