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Permalink Reply by Philippa Scott on June 30, 2009 at 5:37am

Hi Kara! I'm not sure about the rhematologist sorry but I am totally with you on the prednisone thing! My alopecia started as patches last August and progressed quite quickly, my dermatologist also prescribed oral steroids and I resisted for a while. I cracked when I started to lose my eyebrows and began taking them. The steroids made me feel terrible. I was constantly hungry and exhausted and i swear they made me depressed (the drs say this isn't possible but as soon as I stopped I felt better so I beg to differ). Not to mention the fact that they made my face blow up and a 'moon face' was exactly what I didn't need when my self esteem was already in the toilet!

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Permalink Reply by Diane on July 1, 2009 at 10:37am

I'm a pharmacist and a pharmacologist........ your md is WRONG about the prednisone and depression!! this is a well known side effect.......

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Permalink Reply by Mary on June 30, 2009 at 12:24pm

Hi Kara,

After 7 years of messy creams and cortisone shots to the bald spots, when I rapidly progressed to AT in late 2007, I gave in to my dermatologist's suggestion to try a month of Prednisone. It made me feel crappy and I gained weight, AND the hair loss just continued to accelerate until I was AU by April 2008, anyway.

I remain open to the possibility of an effective treatment SOMEDAY, but for now, I think that this lousy disease just does what it wants to do. Since I gave up on all medical options, I've been concentrating on being as healthy as I can... I started a weight training program for the first time in my life, have been eating well, drinking very little alcohol, and I make sure to get cardio exercise of some kind most days of the week, even if it's just walking. I'm bald, but in better shape than I've been in years! For me, it's all about making the most of the good health I have, and AA be damned.

Best of luck,
Mary

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Permalink Reply by Becky on June 30, 2009 at 10:44pm

Hi Kara, I'm actually going to be trying acupuncture and a Chinese herb therapy in a few weeks. I know there is no guarantee of results but the way I figure it, it won't get worse! Plus, acupuncture is supposed to relieve stress and help you feel better so I guess at least something good will come of it!

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Permalink Reply by Mary on June 30, 2009 at 11:40pm

I have to share something that I think was pretty funny. I was in San Francisco last year with family who live there. They were into Chinese herbs at the time, and we all went to a traditional herbalist in Chinatown...a very highly reputed guy. One by one, he examined us by looking at our hands and feeling our pulse and looking at our tongues. Then, with his son interpreting into English, he told us what was wrong with us, or what might be wrong in the future that we should guard against now. And he prescribed complex mixtures of herbs and dried plants and other things for our specific diagnoses.

I was wearing a nice wig (this was when I was still trying to do so). Long story short...he didn't detect my hair loss or any immune system problem. He said I needed a prescription for something vague like female energy. I took the wig off, he looked surprised, and I asked if there was anything else he wanted to prescribe for me. He said no. (I know, it was a bit sneaky. My relatives put me up to it.)

I ended up not using the herbs we bought - I realized after we got home that they had things in them that might cause a problem because of another condition I have, and didn't want to risk it. Also, they would have cost a lot of money to take on an ongoing basis.

Acupuncture - I've had for muscle problems and soft tissue injuries several different times, and it did seem to help with those. Keep us posted, and good luck! If acupuncture would bring back my hair...I'd go for that.

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Permalink Reply by meg on July 1, 2009 at 8:12am

I've tried just about everything... forget the steroids, they have no effect once you stop them if they had an effect in the first place. My feeling about AA is that once the gene is activated then there is no turning back. Once I thought about a total blood transfusion or washing of white cells but the possible side effects (damage) to one's organs is too great. I am AU and have been since three months after having been vaccinated for a trip to India... prior to this I was AA for about 10 or more years. The loss of my eyebrows and eyelashes has had an impact on my mental well being, but the loss of hair elsewhere is fabulous! Soon I will adapt to the eyebrow and eyelash loss and move forward... because ultimately I have no other choice.

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Permalink Reply by Diane on July 1, 2009 at 10:44am

Way to go Demm!
I just can't get WHY a md will prescribed prednisone to an alopecian patient....... although prednisone saves life and is a good medication, it is NOT a right choice for an alopecian.... the risk vs benefice ratio does'nt support this use + prednisone doesn't stopped the progression and the hair fall once it is stopped!
I just can't get it and it makes me angry to see such ignorance from professionals!!
Diane

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Permalink Reply by Philippa Scott on July 4, 2009 at 9:30am

Thanks Diane and Demm for backing up what i thought regarding the prednisone.
I'm from New Zealand and I was referred to one of the few dermatologists in my area, it's hard when your gut tells you not to trust what someone's telling you but they're meant to be the expert because they're a professional. When it didn't work and I was completely miserable on the steroids he pretty much told me that it was my hesitation to begin the course of steroids that had prevented them from working! Needless to say I have avoided traditional medicine in regards to my alopecia since.
I'm really glad that I stumbled across this forum because there are very few alopecia resources where I'm from and it's SO helpful to hear about other peoples' experiences :)

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Permalink Reply by Mary on July 1, 2009 at 10:52am

You're absolutely right about having no other choice but moving forward, Meg. The loss of my eyebrows and lashes was even harder than going bald, but I got some tattoos and moved on. And, the loss of the other hair IS fabulous! I love being able to wear a sleeveless top or bare legs, and never having to think about shaving first.

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Permalink Reply by meg on July 2, 2009 at 11:31am

Hey... just wrote 1st blog... not taking my own words to heart lately. Yeah... I have to remind myself that I am not the body and what attitude I bring to the situation will determine the outcome. Having difficulty this last week... feeling like I am not sure or maybe just thinking way too much! Thanks for all of your support... actually reading the comments here has lifted my spirits and I have no idea why... I guess some place along life's path, there was a fork, and we chose or it was chosen for us, the more difficult route... so what are we suppose to learn?

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