Comment by Emily B on November 8, 2011 at 4:52pm

I got injections in the two locations where I have AA episodes. The hair grew back completely and I did not have any new episodes (yet). It's been about a year with no episodes for me.

The hair that grew back in is darker and finer than my other hair.

Comment by Nikki on November 8, 2011 at 5:16pm

I got the shots for about a year. While I did see some regrowth in certain areas, my hair kept falling out in other places and eventually the areas of regrowth. In fact, I actually had really bad foot and leg cramps that would last for 10 minutes or more sometimes, which I believe was a side effect from these shots. (Haven't had any since I stopped getting them!) I would advise to stop getting these shots. Like someone else said, it's a short term solution to a long term problem, and it personally didn't even work for me. I'm sure there has to be some consequences for injecting a steroid for a long period of time into your scalp even if it's "just on the surface of the skin" as the doctor told me. Doctors are very vague about this, which bothers me. I was actually told that if I didn't get the shots, it would lead to "alopecia scarring," which would be irreversible. Well, I stopped and my hair grew back like crazy...then 6 months later, most of it was gone. Right now I really don't have much hair left at all, which just proves that AA can be so unpredictable. I don't think the shots are worth it. Doctors encourage them because they get paid that way. Isn't it just crazy how insurance will cover these useless shots, but not allow reimbursement for a wig?!?

Good luck to you! I still struggle at times with accepting my AA, but I've learned that I really can't "fix" it.

Comment by Hollyberri on November 8, 2011 at 6:14pm

I went through 2 rounds of the treatments back in 2001. I had peach fuzz grow in for a couple of months just for it to fall out again. They insisted that it wouldn't be painful but the needle for me was bigger than anticipated and honestly I did experience some soreness in the injected areas whenever I went to bed during that time, not to mention the mood swings that I realized in retrospect were probably due to the steroids. I don't recommend them, but I'm sure someone out there has had some success with them.

Comment by charlene sage on November 8, 2011 at 6:47pm

I've been dealing with aa since I was 7. Started with topical creams. They stopped working when I was about 12. Been getting injections ever since. I'm now 44. I only get them when I find a spot. Then usually one month later another. That usually takes care of it. Patience is the main thing. You aren't going to get results in a week. And yes, seems like one spot starts to grow in and another starts. Mine goes in spurts. The only time that I didn't lose my hair since I was 7 was when I was pregnant. Not about to do that all the time just to keep my hair. LOL The only side effects I have ever had from the injections is that if I have alot in one day , I get a headache. Also, my head is tender. But anybody dealing with this knows it is unpredictable. So all choices are totally by choice. I prefer to get them but that is an individual choice and nobody can make that decision for you. Good luck. I hope this has been helpful to someone out there.

Comment by Karli R. on November 8, 2011 at 7:03pm

Thank you all SOOO much for the feedback! :) This is exactly what I wanted to hear, because I know that I would have not heard all of the details from my doctor. When I got injections, I never observed the dents, but I do recall my mother examining my head and noticing something odd after the shots... I will have to ask her again about that. I did have soreness and some scabbing/bleeding, but that was some time ago.. I was having mood swings but I'm not sure if that was a steroid related problem or just a coping stage. I figured being steroid free is the best thing for my health and for my body. An injection that makes your hair rapidly grow back seemed a little "off" to me, and I wanted to get some more inside scoop about it. They had me using steroid cream and shampoo, but that burned a little and made the skin tender.

Since it is an unpredictable condition, I will just refuse that treatment from now on.

Thank you!

Comment by L'Dyne Brennan on November 8, 2011 at 7:41pm

Hi Karli,
I am so happy to tell my experience. I was bald for 4 years after losing my hair to AA. I had the steroid shots in one side then the other-every 30to45 days for 2 years. I did grow hair but the hair was not as healthy as my hair had been and although I was excited to feel normal again there WERE side effects. I have a large dip in one side that is from deterioration of the muscle at the site where the shot was given. also have quarter size craters in my head from the sites as well as dips in my eyebrows. The WORST side effect is from the inside. My immune system didn't work as well and i was always getting colds and healing poorly. My skin was very thin on my arms and tore easily. I was always covered with bandages. When I stopped the shots, my hair fell out again plus my joints ache now from my body not producing natural joint fluid or something. It was like all of a sudden I was old. if I had it to do over I would not do the shots. it was just as difficult losing my hair as the first time, however I do know I will survive it. I really don't think it was worth the side effects and I am sure there are more that I don't know about.
Hope this has helped any of you that are contemplating steroid shots every month and/ or steriod creme every night.

Comment by Susan Innes on November 8, 2011 at 8:08pm

Hi Karli- As you can see, most of us would not recommend corticosteroids, either the injections or the systemic type. There are those people with other autoimmune diseases that have no choice (lupus, RA, etc.) and they face terrible side effects, some with permanent damage to their bones, kidneys, and other organs. Be good to yourself, save the money and spend it on things that make your life richer and more rewarding.

For Locks of Love hair donations, 10 inches is the minimum; however, I would call a local hair salon to confirm that. It's very encouraging that you can think of others during this difficult time. Research has proven that volunteering or helping others often improves our own health so you may find in the process that your own hair grows back...just a thought:). Hugs, Susan

Comment by You can do it : ) on November 8, 2011 at 8:37pm

I have been getting the injections for many years and my shrinks tell me I am lucky that I don't have the side effects of the steroids. What are the exact side effects ?

Comment by sally on November 8, 2011 at 9:01pm

re Susan's "Be good to yourself, save the money and spend it on things that make your life richer and more rewarding.": i took my daughter to Dr. Shapiro: the top dermatologist/alopecia expert at NYU medical center. susan's words are the exact words her sister & i told her after that extremely expensive & hugely depressing meeting. the thousand dollars would have been much better spent on a dress and a air of boots. he was a complete quack and he made her feel like she'd be better off dead.

Comment by Laina on November 8, 2011 at 9:35pm

I have been getting injections on and off for years (as needed), I have to disagree with Kate about the injections being lethal long term, the reason is because its such a low strength and is placed very shallow in the scalp. I do have disphagia (indents in scalp) but they go back to normal. I haven't experienced any negative side effects only positive. I went 7 years without injections and a full head of hair, up until a couple of years ago when it acted up again. Email if you want to chat borwegenhays@yahoo.com

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