Alopecia areata worsening after prednisone

I was diagnosed with alopecia areata a long time ago. Went through a flare up over the summer and was put on prednisone. After 25 years of on off dealing with alopecia I never was put on prednisone. I told doc I was anti steroid but he assured me with low dose there would be no crazy side effects. It made me extremely irritable so after 2 months I wanted off. I had to taper off of course. He said I should expect to have mood improvement and MORE HAIR LOSS!!! I never would have gone on this drug had I known. He said I'd lose anything I gained. I accepted that and moved on. Things seemed to be good. Spots grew in despite being off the pred. A few months later my hair started thinning rapidly all over. No spots just diffuse thinning everywhere. I also noticed my body hair thinning but growing in clear. What hair stayed I could see suddenly lost color. That's where I'm at now. Waiting to see if this is TE from the pred or if my Alopecia areata is morphing. So aggravating. ive read that prednisone can cause major hair thinning and that the TE can occur 2-4 months after off the drug. Has anyone else experienced this? It's so confusing to know what direction things are headed. I've never had a scalp biopsy. Maybe that would be a good start. Meantime I've seen an integrated medicine doc...

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Permalink Reply by Halewhy on January 2, 2016 at 5:06pm
my dermatologist said it's likely just my AA going crazy. Is there a way to determine for sure? Scalp test? How did u know it was TE?
Thanks for the replies :-)
Permalink Reply by Halewhy on January 3, 2016 at 1:47pm
Thanks Tori

This helps a lot. I think the hardest thing is the waiting game and not knowing where things are headed....
Permalink Reply by HollyC on June 13, 2016 at 7:56pm
Hi Tori,
I was just reading your response about AA and TE. I was diagnosed with AA in June 2015. Then my TE started in October and my hair has been shedding ever since. I had a scalp biopsy that revealed TE. My derm believes that the TE is from an iron deficiency. How is your TE? I am worried that my AA is progressing since my hair is still thinning. Any thoughts

Holly
Permalink Reply by HollyC on June 13, 2016 at 8:22pm
Tori,

Thank you for getting back to me so quickly. Yes I did have severe low iron and have been taking an iron supplement since October. I get the injection directly into my bald spots. I have 4 in total which were all filling in nicely until recently one began to start to progress again. How long did your hair shed for? Is it coming back in now?
Permalink Reply by HollyC on June 13, 2016 at 8:45pm
During that time did you ever consider wearing a wig?
Permalink Reply by HollyC on June 13, 2016 at 8:57pm
I am just scared I will loose all my hair. This has been the most emotional and trying time.
Permalink Reply by HollyC on June 13, 2016 at 9:10pm
Thank you. I hope we can talk again soon. I am really looking for support.
Permalink Reply by fev on October 10, 2017 at 2:39pm

Tori,

I had a kenalog injection in my neck in December 2016 and I have been losing hair profusely. How long did yours fall out for? Did it ever grow back?

Permalink Reply by Halewhy on June 13, 2016 at 9:12pm
Hi Holly.

I know this is all new and scary. But hang in there. I personally felt better when I cut my hair short as I went through TE. I actually left a long bang and cut the rest really short and wore cute hats and scarves and let my bangs peak out. Maybe consult your hair stylist to come up with something u can work with while u go through this. Treat yourself and try to stay positive while it passes. I'll hope for u. :-)
Permalink Reply by HollyC on June 13, 2016 at 9:59pm
Thank you. Could I request you as a friend on this site?
Permalink Reply by HollyC on June 13, 2016 at 10:10pm
Di you know if anyone who has become pregnant or had a child while experiencing AA and TE? I have heard that after the birth the child you loose a lot of hair.
Permalink Reply by Halewhy on June 14, 2016 at 7:43am
I have heard that this is common. I don't know much about it. Something to discuss with your dermatologist. Did u find a good doctor?

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