Hair Loss with Dermatomyositis : Hi, I’m quite... - Myositis UK

Myositis UK

1,307 members529 posts

Hair Loss with Dermatomyositis

PlatinumPenguin profile image
4 Replies

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!

Written by
PlatinumPenguin profile image
PlatinumPenguin
To view profiles and participate in discussions please or .
Read more about...
4 Replies
Lisalou19 profile image
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 profile image
PlatinumPenguin in reply toLisalou19

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 profile image
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 profile image
PlatinumPenguin in reply toRabbitygal

Thank you so much x

It’s nice to know I’m not alone

Not what you're looking for?

You may also like...

Dermatomyositis

Hello I was diagnosed with Dermatomyositis in 2018 and still believe I’m not receiving the right...
Lucy_4 profile image

Not alone? Dermatomyositis

Hi, I'm Dia. I was diagnosed with dermatomyositis back in early 2019, but didn't come online until...

Could I have dermatomyositis?

Firstly let me apologise for the length of this. I know it's not a good idea to ask for diagnoses...
Chancery profile image

I think I have Dermatomyositis??

Hi all it’s my first time posting on myositis page. My story like so many others is very long so...
Benne09 profile image

Can my GP help with tests?

I have a rheumatologist's referral, which will likely take 6 months. When it was made, it was...
Chancery profile image

Moderation team

Jo-Goode profile image
Jo-GoodeAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.