Roaccutane

[Bloop45]

Hi everyone,

I posted a while ago about my acne. Well I’ve been to see the dermatologist and he’s happy for me to start roaccutane! I’ve just got to get hold of some contraception and book to see him once 4 weeks have passed.

I’m super excited, but also terrified. Summer 2018 I had a major drug reaction called DRESS syndrome which almost killed me. It’s was so scary, my liver and kidneys failed, I was so poorly. Then 3 months after everything when I thought I was getting over it, my hair fell out and it was like another punch in the face.

I’m absolutely terrified I’m going to react again, can anyone tell me if bloods are done monthly? He’s said he’ll be seeing me every 4 weeks for a pregnancy test and to see how I’m getting on. My only concern is the drug that gave me this reaction (sulfasalazine), I was also having monthly bloods, and unfortunately by the time the problems were picked up on those it was too late. I’m hoping the dermatologist will understand and let me have fortnightly bloods. Stupid old me didn’t think of this at my appointment!!

And I’m worried my hairs going to fall out again. A year later and it’s only just got back to how it was. But I’m trying to tell myself this will all be worth it. While I’m here, I’ve already got eczema, so what’s the best moisturisers and body washes to use while on treatment? Thanks 😊

[Glas46]

Hi there,

First, congrats on getting the meds you wanted! I can understand you're anxious, my daughter has also had a very extreme allergic reaction to medication in the past (IV cefoxitin) that put her in hospital for a month. She is also allergic to serveral other meds and adhesive dressings. Fot this reason, when she started roaccutane she started on a very low dose 10mg and gradually build it up to 40mgs. She has had no adverse reactions other than dry lips. She has also had hair loss on other meds (voriconazole), which is very upsetting for her. I was concerned after reading that hair loss may be an issue with Roaccutane (this seems only to happen when the dose is very high) but our experience has been that her hair has never looked better! She had very oily hair before and always wore it tied up, now, for the first time in years, her hair looks clean. She's thrilled, she's had it cut and wears it down all the time. It sounds like your hair loss was due to the trauma your body suffered from the reaction, rather than a reaction to the drug itself. Hair loss from trama usually occurs 3 months after the event so it sounds likely. I do understand your worries though. I analyse every little thing and worder if it's due to roaccutane or just normal teenage stuff.

About bloods, they usually only check them before you start and 8 weeks after. Every 4 weeks you will have to do a pregnancy test (they just take a urine sample). If you are concerned about your bloods you could ask to have them done more often. There are also signs to look out for, like dark urine, thirst etc. If you are concerned at all they will see you immediately. Good luck. xx

[Bloop45 in reply to Glas46]

Thanks so much for your reply! It’s nice to see a positive post as on other forums I’ve just been told don’t touch it! I agree about my hair loss, I had fevers of about 39 for 3/4 weeks so that didn’t help and my ferritin was a bit low too from it all. I totally get the hair thing, my skin is soooo oily so my hair always looks gross too. I know if my derm doesn’t want to do regular bloods, my GP is amazing and worries about me so much since what happened, he always checks my kidney function just to be safe. Xx

[Glas46 in reply to Bloop45]

I couldn't attach a photo in this thread so I made a different post with the facewash etc that my daughter uses. xx