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Cortisone injections were a breeze

Discussion in 'Newly Diagnosed Alopecians' started by AmyCE, Feb 21, 2012.

  1. AmyCE

    AmyCE Established Member

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    I posted for the first time last night in Share Your Story and said that I would try to document what I experience in case it resonates with any future visitors to the forum. So here it goes!

    I was diagnosed with Alopecia Areata exactly 8 days ago after discovering the attached bald patch. [attachment=0:3fzyr7u1]photo.jpg[/attachment:3fzyr7u1]

    Nothing too horrible--covered up nicely by my existing hair and not affecting my life. But I have been grappling with fear of the future, wondering about the progression of Alopecia Areata and generally freaking myself out (which I am working on!). My sister claims I have always had this patch (she dyes my hair) but it's bigger than she remembers, which makes me think I've had this for years and it comes and goes on its own (no hairdresser has ever mentioned it, which seemed funny to me when my sister told me she knew about it).

    I just got back from having my first round of cortisone injections, which were FINE! I know with a larger area, it can be quite painful but because my patch is small, it really wasn't bad at all. Took 2-3 minutes. It does itch a little now but that's the only real effect at the moment. I was also given 0.05% Clobetasol solution to apply topically twice a day.

    I'm blessed with a female dermatologist who is also in her 30s so it really helped to voice my concerns to her today. She reassured me that the rest of my hair looks great and that most of her patients have one or two patches that usually respond well to the injections. So I am trying to focus on the most positive prognosis! She also said I had hair growing back here already ('baby hairs') so it might have been resolving itself on its own but I feel better getting treatment at this stage.
     

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  2. dancer

    dancer Experienced Member

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    Glad it went well :)
     
  3. AmyCE

    AmyCE Established Member

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    Hi HereToday! The wonderful members of this forum have given me some great words of encouragement to help with my attitude so I'm feeling a lot better emotionally today. :)

    I did ask my doctor when she told me I already had regrowth--I basically asked if I should even bother with the shots then. She said that I should because the small amount of regrowth (which is hardly anything anyway) might be all I would ever achieve without shots and that they "wouldn't hurt" my own progress. To be honest, what I have growing back does not feel like something worth preserving if it is a risk (there's not much there!).

    I've been on topical and injected steroids off and on for the last 5 years for eczema (I also have allergies and asthma--all of which I hear makes me more prone to Alopecia Areata) so I didn't worry about adverse effects of cortisone in this case. I maybe should have asked more questions about it but I really do trust my doctor.

    This statement from the NIH website implies that injections would be continued even after new hair growth: "After 1 or 2 months, new hair growth usually becomes visible, and the injections usually have to be repeated monthly."

    http://www.niams.nih.gov/health_info/alopecia_areata/#8

    Maybe your allergic reaction was a factor in his decision. I know that cortisone is generally frowned upon when dealing with any kind of injury/infection because it can damage your skin so he might be considering that as well. If you have the skin reaction to the topical under control and your hair is showing some regrowth, he may be encouraged and just wants to keep your scalp free of any further irritation?
     
  4. AmyCE

    AmyCE Established Member

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    Yeah, I'm a little puzzled too. Hopefully some other folks who are pursuing injections can give some insight!

    Good for you getting on the register. I need to read about this!
     
  5. AmyCE

    AmyCE Established Member

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    I know I don't have much of a story yet but I just signed up for the registry (one of the participating clinics is in my city so it seemed like a sign). Anything I can do to feel proactive is making me feel better. I need to keep moving. :)
     
  6. AmyCE

    AmyCE Established Member

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    I was given the impression that their subject size was limited so they may not call me in for blood samples? It would be a shame because I can literally walk to the hospital they're at in 10 minutes! We'll see. I'm happy to help with anything that further research. I'm still in the freaking out stage too.
     
  7. sam

    sam Guest

    Freaking out is a natural response. It's scary at first when you do not knowing what the hell is going on with your body. I know...that was my story back on August 19, 2010.

    The doctor told me about the unpredictability of this disease, and could not tell if I would just lose in small patches, or lose it all. So I went home and took pics of me, then ordered a wig, found a stylist and had an appointment 1 week later. The pictures really helped as the stylist knew just the look I wanted to achieve. The wig came out almost perfect (it's a wig, so it'll never be perfect, but pretty close).

    The hair loss for me happened fast. I HAD to wear that wig beginning Sept. 10, 2010. For me, it happened that fast!

    After trying the topical steroids with no response, my doctor started with the scalp injections of Kenalog in October - 5mg concentration suspended in 2.5cc's of solution (could be saline, I'm not really sure). Injections were given every 6 weeks.

    Very long story short....I had lost about 99% of my scalp hair but maintained my eyelashes and eyebrows thank God. I never missed an appointment and now, my hair length is just below my jawline. I'm just waiting for my bangs to be the right length (right now, I look like Spock!), and I'm out of the wig, provided I don't relapse in the meantime.

    Point being...have hope and although reacting (uncontrollable sobbing) is inevitable, you must also try to act on this disease as well. How to act on it? We've been blessed with a wake-up call to do a better job about our health. Also, be prepared for your stylist if it comes to that and continue asking your doctor questions.

    I know your fears...I will always have them too, as relapse is not out of the question. Just educate yourself about this and try, try, try to be patient. And yes...I registered for and participated in that study, too. Made me feel better about things as it's always nice to make a contribution like this.

    My best to you,

    sam
     
  8. AmyCE

    AmyCE Established Member

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    Sam, I love how proactive you were about this! It must have been so scary to lose so much so fast but it sounds like you did everything you needed to and were prepared. Thank you for sharing your story and your advice. Patience might be the hardest part at this point and it's good to be reminded. :)
     
  9. sam

    sam Guest

    I think it took me about 4 months before I stopped crying on a daily basis (seriously, that is NO exaggeration). It is really difficult...you can't help but feel helpless and out of control.

    And even with seeing the regrowth, I would cry from time to time, especially where I see new patches in the areas of regrowth.

    I promise you this....you will get to the point that you won't cry on a daily basis.

    This disease requires a great deal of patience, therefore, when it chose me, it did not choose wisely. I am the most impatient person on this planet.

    Emotions will be all over the place. You won't be able to do too much about it. That's why it is so important to find something that you CAN do. Recognize what is in your control, and what is not. And as difficult as I know it is, you must trust your doctors. I had a hard time with that. But, if you do not like your doctor, get another. I had to do that too.

    If you have any questions that you want to ask me, please send me a message here....I will get back to you.

    All my best,

    SAM
     

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