Hair thinning on steroids

[YogaJM]

Any thoughts on hair thinning on steroids? I have been on treatment since early December 2022, and am held at 10mgs Prednisone for three months now as my diagnosis has been changed from PMR to Eosinophilic fasciitis. Body hair as well as head hair is thinning. My questions are: does this start to improve as you taper down the steroids, and especially, does hair regrow and thicken again when you manage to get off steroids? Has anyone found any other treatment like folate useful? Many thanks.

[DorsetLady PMRGCAuk volunteer]

Now you have posted this -you will find related posts….and yes it does improve as you reduce the Pred…but don’t blame that entirely, your hair may be thinning because you are/have been unwell..

more info from the FAQs -

healthunlocked.com/pmrgcauk...

[YogaJM in reply to DorsetLady]

Many thanks for that. You are always helpful Dorset Lady. Yes, it’s important to remember that what is happening with your hair now probably relates to a number of weeks ago.

[DorsetLady PMRGCAuk volunteer in reply to YogaJM]

Months even …. 6 months not unusual

[SnazzyD]

Don’t get me started on hair! Oh, too late…I’ll be brief. Firstly, ANY systemic shock to the body can cause a hair loss/thinning reaction. Usually it is delayed by a few months.

My hair history over 6 years is something like, started Pred, hair became thick and lovely for 3 months+, 5m later practically all fell out, got wig. Grew back to mad scientist look, got better with lovely curls, lovely then mad scientist again. Long covid, thin. Poor adrenal function fell out badly, recovered to rather nice if I say so myself. Lack lustre for months after covid vacs caused scalp pain (?). Rather nice, getting cocky as adrenal function so much better 4 years later. Covid badly 8 months ago, fell out with bald patches at 6 months. Growing back now, don’t need to do a combover but you won’t see me in front of a camera. So you see, it is unpredictable and we all have similar but different stories to tell.

[Seacat30]

I started out with a huge mane of long hair so you might not notice the losses but they have definitely occurred. I can see by the obvious phases of regrowth at various lengths. Like Snazzy I think it has been a stop start process. The most recent bout was probably about 2 months ago from the length. That was at 0.5mg but it probably relates to 12 weeks earlier which would have been about 2.5mg? I can't swear that it has stopped.

[nallufl24]

everyone has different experiences but my hair fell out in clumps. On top of feeling like hell this was an insult added to injury. My bathroom shower was awful. I tried everything to strengthen my hair but it didn’t matter. At 10 mg pred it finally stopped falling out but it looked like a dry Brillo pad. When I got off pred it finally started growing again. It is now thick and I’ve actually had people compliment me on my beautiful hair. Whether it was prednisone or the shock of being sick or GCA I have no idea but it does get better again