Has anyone with Lupus been prescribed Isotretinoin/Accutane for acne?

[lupeylady]

Hi all,

Need some advice - After many appointments with my dermatologist to deal with my moderate acne, and trying other options, i’ve been given isotretinoin (20mg a day atm) and have been taking it for a week. However in this past week, my health anxiety has gotten the best of me and has been googling over all the side effects and the extreme effects it could have down the line. I want to believe the doctor in that most people just end up with dry skin and chapped lips as side effects, but I can’t help but feel like he’s not paying attention to my exact case as a person with SLE and APS, and that it might be a more complicated case for me. I wanted to know if anyone else has been on Accutane/Isotretinoin and might have some advice or can share their own experience with the drug? At the moment my anxiety is through the roof, and I’m considering calling my doctor to just stop taking it.

Thanks!

[Tanitani]

It is considered safe for people w lupus. However it us up to you to take it or not. You can always consult your rheumatologist and/or dr google..

[MissusTee]

I have scleroderma and was prescribed it a long time back. You absolutely can’t get pregnant on it, and it’s been implicated with serious depression, which I have always suffered from. It did clear the acne though.

[Hidden]

Your state of mind is more important than your skin. Sorry to be blunt but mental health is key to wellness when you have illness that needs such an effort each day just to function. 🙂

[Hamptons]

I used Rosccutane which presume is in the family. It comes with a scary list of side effects., my nephew and niece also used it. None of us had any issue bar dry lips. It cleared my acne which then never returned.

[Choccy8]

I was going to be prescribed Roaccutane for a type of acne that my dermatologist thought was related to the lupus. The spots were mainly around nose and chin area. Like you, I was worried about side effects, and I think I was also going to be called in for frequent pregnancy tests, so that was going to be a bother. I found an amino acid supplement called N Acetyl Cysteine really helped clear my skin. I take 600mg first thing, on an empty stomach and then wait at least half an hour before eating. If you search online you'll find studies about its use for acne and lupus. I also find when I react to foods, I often notice it in my skin, which can be useful! My skin had more or less cleared up, apart from a week or so before my period. I've recently had to up my steroid dose after a bad bout of pleurisy, so I think the higher dose has made it flare up again. I've also noticed that hydroxychloroquine and Mycophenolate gave me spots, though am hoping to go back on Myco at a lower dose on the principle of better the devil you know...

[bookish]

Fortunately for me, no-one prescribed Accutane although I had 40 years with acne and a generous range of treatments. Nothing made a difference until I went gluten free for another reason altogether at which point skin cleared and it has never returned. I've read since that any food intolerance can do this, dairy and gluten being the most common. It may not help you, we are all different and with different triggers, but if you haven't already changed diet it might be worth some consideration. (I'd even asked my derm who insisted that food made no difference.....huh!). Best wishes