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 June 13, 2016 at 8:26pm

So an update on my condition, My hair is Still white! It seems that the thinning has stopped but my hair is growing in white and has been since January. I know AA spots can come in white at first but all of my hair everywhere is just a bit finer and completely white. thankfully my hair is growing in pretty well, except for the back neckline area. So I can wear headbands and show off my new "blonde" hair. But its weird. Im staying off steroids of all kinds. Im currently just doing a vitamin combo called "biotin forte" and anathralin/anihistamine treatment. keeping things a bit low key to let my body heal from the shock it went through. My new dermatologist said this is all an aftermath from the withdrawals my AA went through after going off prednisone. She also said that she DOES NOT put AA patchy hairloss patients on Pred because once you go off, you lose it all. Staying positive....I wonder what Ill look like next year. cheers!

Permalink Reply by Scott on June 14, 2016 at 10:38am

Halewhy, your story is curious. I also suffered with AA for many, many months. Finally, in desperation, I visited an expensive Harley Street specialist, Dr Fenton, apparently an expert in alopecia. He put me on a course of oral prednisolone. It didn’t help. However, within a few months the nature of the alopecia changed from patchy spots to uniform shedding .... everywhere.

I now wonder if prednisolone was the trigger for the transition from AA to AU.

Permalink Reply by Halewhy on June 14, 2016 at 12:45pm
When did the uniform shedding start for you? Recently? I was worried about AU progression at first. But it seems that it is growing back in fairly full, just still white. When I was shedding everywhere what hair stuck around turned white, the ends of my eyebrows were still brown but the base was white. Very strange. I can't find anyone else with this occurrence. My blood tests are all normal. Bizarre huh? Can u tell me more about your current status?
Permalink Reply by Scott on June 15, 2016 at 3:50am

AA for maybe 6 months, then a switch to uniform shedding. Within 3 months I was AU. 

That was 10 years ago. My hair has never come back.

I never had white hair, as you are seeing in your case. 

I'd take growing white hair as a positive sign :)

Permalink Reply by TMB on October 10, 2017 at 10:30pm
I have also been dealing with AA for almost15 years now. Have had periods throughout those years of hair growth and then hair loss. Unfortunately it is a cycle of good and bad. Have taken kenalog steroid injections on the scalp and in the arm. Am dealing with a terrible bout of AA for about one year now. The worst ever. I do notice that hair loss now is a combination of bald patches and diffuse hair thinning. I have not been on any meds for the past six months. I am generally a healthy food eater but am more conscious now than ever on everything I put in my mouth. I do believe this condition needs to be healed from the inside out not the other way around. I believe doctors really don't have the answer either and all teaatments available to us are in only a band aid.
Permalink Reply by early 20's on October 25, 2017 at 11:17pm

Hi Halewhy, i just want to know the condition of your hair now? Did it improve? I took prednisone last february 2017 beacuse of some allergy but i abruptly stopped it. I only took it for 3 days and didn't tapered it down( i know i should've). I lost all my hair within 3 months then I went to another dermatologist and she prescribed prednisone again and took it for 2 months, I grew my hair back, infact it is much thicker than my normal hair. But the last week of september i started to notice that my hair is falling again, I don't know what to do.

So i guess my question is did you lose your hair again/ did it got thinner and thinner and did it grow back?

Permalink Reply by Halewhy on October 26, 2017 at 7:40am
Hi there!
Well my hair has in some ways stayed the same as when I wrote the above. I have ophiasis still where the lower back and sides by temples are missing. Much of it is still white, with my natural color coming through on the top. I do have a couple of small bald spots as well. So things are taking a long time. But I think this ever changing look I have going is just my normal.

I’m so sorry u are going through this. Are u currently back on prednisone or have you tapered recently? What is the extent of your loss? When u lost it 3 months after taking it for 3 days, was it diffuse loss everywhere? Are you accustomed to all over loss or just in spots?
Permalink Reply by early 20's on October 27, 2017 at 5:59am
Thank you for getting back to me so fast, i wouldn't have thought you'd reply seeing that this post was last year.

I'm not taking pred anymore and i don't want to be back on it. It makes me grow so much hair on my face, my vision getting blurred, and i feel my bones weaken so i'm staying fas away as possible to pred. Anyway, the first time i was on pred (the one i took for 3 days)and stopped it after a month there's diffuse thinning and then 2-3 months after I lost all of my hair. Literally. It's really a big burden for me. Then after I took pred for the second time (for 2 months) i grew full head of hair even thicker than what my hair looks like. After that 2-month pred tapering doen, a month after I noticed that My hair is falling again. I do have a cream that i put everyday to my bald spot right now.

The bald spot i noticed is not the clean one you know what i mean, it's like a bald spot still with hairs lol sorry i suck at describing. I don't know if i'll lose all my hair again it's so frustrating.
Permalink Reply by Halewhy on October 27, 2017 at 6:16am
Other than when you lost all of your hair after prednisone, would you say you loss typically falls more into alopecia areata? Just spots in your head, with consistent hairs on your your body?
Permalink Reply by early 20's on October 27, 2017 at 12:14pm
I can see some of my lashes and eyebrows falling out or it's just me being paranoid. I hope it's not falling because my alopecia is getting worse or something. I've read enough about alopecia and found about exclamation mark hairs and when i took a closer look on the hair that's falling i can see that i have those exclamation mark hairs. Did that happen to you?

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