Hair loss from PMR or Steroids?

@joebloggs I don't think doctors consider hair loss a significant enough side effect to mention it. Those of us dealing with know the effects on our sociability.

@deniseinca me too. Sudden 50% hair loss over 6weeks after high dose pred. Definitely a side effect of the pred , and not from stress of the illness or anemia , because my hair has now grown back different texture. It’s now curly
( previously straight and fine ) and also thicker than it’s ever been. Hopefully it stays that way.

I did use minoxidil foam , adopted high protein diet & took biotin supplement as advised by the dermatologist , so I don’t know if this helped with regrowth ? Or if my hair regrowth would have occurred anyway?

@maye33 I think the hair loss is from the steroids. I was losing a lot of hair but now that I am down to 2mg/day, my hair no longer falls out.

My hair thinned considerably so that I got several precancerous spots on my scalp last summer when tapering from Pred. as a result. It was too hot for a hat—I’ll have to be wearing scarves I guess. (I’m a gardener.)
Also Prednisone related—my eye prescription went down two notches and I went from barely any cataract to level 3/operable. My ophthalmologist attributed that to Pred.too.

I am stunned by my hair loss, and wondered why my doctor didn’t mention it as a possible side effect. I’ve gone from long hair to medium length, and now a pixie to try and invent fullness. This haircut plus moonface (and the general weight gain) is challenging to accept as the “new” me. I’m currently at 8mg Prednisone, tapering 1mg per month.

@teddyz agreed. I had to have high dose intravenous life saving prednisone for large vessel GCA a year ago .

However medical recognition that prednisone does affect hair ( as it does skin and bones so why not hair ?) needs research and medical confirmation.

Once it’s a recognised side effect of pred is maybe some pre counselling around the real psychological/ social impact of superficial changes to body and notably hair that prednisone causes could be routine.

My rheumatologists comment when I complained about heavy shedding of hair was “ I don’t see much of that “ and no other suggestions.
My local Dr observed my sudden and dramatic loss of hair said “it’s not from prednisone” rather more likely from stress and referred me to dermatologist who said nothing to the idea that prednisone caused my hair loss . He did a biopsy that was inconclusive.
Dermatologist had no comment on the cause or if the shedding would stop. Not reassuring, and no particular medical advice, except try minoxidil topically.

The take home message from my experience is Drs don’t accept that prednisone causes hair changes or loss . It seems from this forum and other online sources ( including AI) prednisone does change hair as it does bones and skin . However it also seems hair grows back when pred is reduced or ceased , sometimes with different texture.
That’s exactly what happened to me , after 3months my hair grew back, albeit curly and arguably thicker.
More importantly my GCA quickly came into remission with pred .
I’m back to good health.

I have very thick hair. Well into starting prednisone I had significant hair loss. I am now down to 2mg/day and the hair loss has stopped. You will find a lot of answers for PMR on the internet. Just be sure you are reading info from reliable sources like the Mayo Clinic, Cleveland Clinic, etc.

I had severe hair loss when tapering off prednisone. My dermatologist offered to give me minoxidil and suggested a special shampoo. I am now off prednisone and using actemra. It is now six months and I definitely see hair growth. The consistency is much different frizzy, almost like a brillo pad.
My (Dermatologist) said give it time it should come back.

I also lost a lot of hair but in my case I think it was from the methotrexate. I discontinued methotrexate a few months ago and hair growing back. Still on 15 mg prednisone a day 🤷‍♀️