Roaccutane for Hidradenitis Suppurativa

Skin, nail and hair health
1

Hi,

I'm just wondering if anyone had taken Roaccutane to help with the chronic skin condition called Hidradenitis Suppurativa?

I'm 28 years old, and I've had HS since I was 13. After I had my son May 2015, I've suffered badly with HS on my groin area.

I'm having surgery in 2 weeks remove some of the area, including some of my vulva. (yes, I cringe everytime I think about it). I'm hoping this will stop the effective area.

I seen my dermatologist last week, and she's recommended Roaccutane. I've had endless antibiotics that don't help. Roaccutane seemed like it could do some good, and I feel quite positive about it. I've got to wait until I'm all healed before starting the course.

I've noticed there are side effects and people have a tough time with them, but I'm trying to look past that and hoping it will help me out.

2

i was told by my dermatologist that rouccatine is ständard for more severe sufferers.  there are some nasty side effects but they will be exxplained to you first.  only you can decide whether it's worth it to you. x

 

3

I'm stage 2 with on going flare ups on my groin area. Plus it's jeopardise my work now. I've had this part for 16 months and after so many antibiotics and creams, I'm going for it with Roaccutane. Side effects wise, it'll be hard, but then I'd rather give it ago and hopefully stop the suffering.

4

The biggest side effect for my son (he was on it for bad acne) was dry lips. Get some really good lip balm!

And don't get pregnant.....

5

Thanks carolinap.

Definitely not planning too. Already on the coil and condom

6

Hiya,

I've been on Isotretanine for just over 2 months, first month 20mg, second month 40mg, I'm now on 60mg. Which is my peak dose. I'll be on this until Dec I think.

I started off with super dry lips and. Really bad Cracks at the sides of mouth but they'be gone now. My side effects have recently involved joint pains and a 2 day migraine, some people get hair loss, blurred vision, dry mouth/eyes. Depression is a big one too. But I've been ok with that.

You need to watch your cholesterol too. I'm not overweight but my cholesterol is up, they say it may be due to the amount of antibiotics I've had over the past couple of years, I was shocked! I'm 34, active and good diet!

I have been drinking stupid amounts of water and slapping on the moisturiser.

I accepted that I'd need to go through the treatment and side effects to rule it out. I've heard people say 'yeah it was tough but worth it', others say never take it, it's poison.

It sounds like we're similar stage (2, mainly in groin but get boil flares occasionally in pits)

I've always had greasy skin and big pores, and got boils and deep lumps on my face. I could cope with the facial acne, but the HS was destroying me, i couldn't walk and in so much pain. It was affecting my work and how much I went out.

I wanted to see if the meds could catch my HS before it progressed further and at the same time help my face!

I've taken the risk but who knows what my result will be long term. Many people with HS find roaccutane doesn't touch it. Trials have proven it's not a sure thing.

roaccutane stops the sebum and makes the pores less sticky. This in turn should help to prevent new flares, but it totally depends on the person and how quick you catch it before treatment.

All I can say is that I have had no new flares while on the meds (so far) the one I was battling is shrinking every day and the skin on my face has never been so clear/matte. I'm feeling positive as having. clear skin is boosting my confidence, I feel less worried about my skin. Ive always found my HS trigger is stress, and I used to stress over how spotty I was in my 30's (along with other things) so I've made some life changes too.

Sorry for my waffle! Good luck with your journey.