Hair Loss with Dermatomyositis

[PlatinumPenguin]

Hi,

I’m quite young (22) and was diagnosed with Dermatomyositis back in September, after suddenly becoming so severely inflamed in my joints that I was unable to move, and had to be taken to A&E for urgent tests.

I am now currently taking 5mg of Prednisolone, 200mg of hydroxychloroquine and 20mg of methotrexate.

Today, whilst washing my hair, about 70% of it fell out, which was pretty horrifying to me. I wanted to know if anyone else has had the same experience, because I need someone to talk to!

[Lisalou19]

Oh my 😢. This must have been horrific for you.

I have heard many who have the hair loss issue and many have scalp treatment medication. I have a steroid scalp wash, I will get you the name. Some days my scalp is very thick with dry skin so I kind of now know when my scalp needs treatment.

Of course this could be a medication reaction. Please try and get an appointment with your gp or contact your rhuemy department . Please don’t suffer in silence.

Xx

[PlatinumPenguin in reply to Lisalou19]

Thank you for the advice.

I had an appointment with my rheumatologist because my scalp seemed normal, and he seems to agree that it’s a reaction to the methotrexate!

I’ve now been put on some other medication as a substitute

[Rabbitygal]

Although my hair went very thin whilst I was on the high dose of steroids (40mg) since I have dropped down to 5mg it has started to thicken up a bit. At no point did I have actual hair loss in large volume! Please see someone about it. I found myself feeling quite low at times and I am sure hair LOSS would make anyone feel anxious xx

[PlatinumPenguin in reply to Rabbitygal]

Thank you so much x

It’s nice to know I’m not alone

[Galaxies1]

Hi yes the very same thing happened to me. Hoping you're doing ok . Try scalp massaging, soothing oils to ease any soreness. 🌸