Hit a wall with Roaccutane - anyone else?

[LidlPanAuChoc]

This is my fourth month of Roaccutane and feel like I just need to stop. I'm worried about the treatment not working properly if I stop.

I'm currently on 80mg and sick of the dry lips, headaches, it's even stopped my periods (although there's no direct link!) and I'm just tired of it.

Anyone else not completed their full course and treatment has been successful? I have no spots now and haven't for about 6 weeks!

Dh is on these and he says it's brutal. His lips are full on scabs, he has headaches, his skin is really dry, he gets bad pains in his sides and has to have regular blood tests.

He had these last year and stopped taking them after a few months and his acne came back hence why he's back on them.

What dosage are you on? I'll find out what Dh takes.

I'm on 80mg and have been for two months. They've worked wonders but it's tiring. My ribs/back hurt in the night, my lips are chapped and painful.

I have a constant headache and I've got to the point now where I'm dreading taking the pills (even a lower dose!)

I don't want all the past few months to be undone hence why I still take them

Sorry, just read first post. 80mg!

He's on 20mg. He was on 40mg last year. He requested a lower dose this time to see if it would help side effects but they are just as bad as the last time he just said.

Did he take his properly for the first time? I'm worried mine will come back if I stop taking them early

80gm is a very high dose. I think the max is usually 60mg. Certainly my dd started on 20 mg, increased to 40 for a while and then was on 60 for a few months. I think the important thing is to work out the cumulative dose needed and that's dependent on body weight. There's a maximum recommended effective dose. Plus you need to be clear of any new postules for around a month. It took DD about 6 months in all.
There is a relapse rate of around 20% I think and surprisingly it's more likely to be women who relapse.

The maximum dose is 1mg/kg but my dermatologist says she rarely uses that dose (though I did get up to that the first time I had it) because you get a lot more side effects and little extra benefit. People apparently do better with a lower dose for longer as they stay on it, whereas a lot of people just can’t tolerate the higher doses.

She also says 2 months with no more new lesions then stop. That’s only 2 more weeks for you! Are you taking 4x20mg capsules? Could you maybe knock it down a bit?

DD's dose was cut at around that stage ( was on 70 but it causied a rash) and she went lower for longer. The side effects were much more manageable.

80 is a really high dose no wonder you feel awful! I was on 20 and dropped to 10 and it still cleared my acne. I’ve been off it 5 months and still clear...time will tell if it lasts!

It's a cumulative dose so if you stop now chances are it won't last long term. You are on a high dosage, it's recommended now to do smaller doses over a longer period of time. Was due to do 60mg over 4 months but found the symptoms too difficult so reduced to 40mg over 6 months, which was much more manageable. 2 years later I'm still spot free although get the odd one over my period usually.

It sounds like a high dose. I took a low dose and continued for the whole course. This was over 10 years ago and I still get the odd one but nothing major at all. I'd ask to lower the dose of I were you, then you might be able to keep it going.

Ask to lower the dose. Dd had a terrible time with it.

Her skin was beautiful for a year then lots of spots came back. She couldn't bear to take it again but the pill sorted it.

The cumulative dose idea is becoming outdated now.
If you look at more recent evidence there’s a lot of argument for lower doses working as effectively with less side effects.

@Troton my dermatologist mentioned better success rates with low doses but that they were needed over a longer period of time (which they're not keen on due to the side effects which is why they default to maximum), some people are going as low as 10mg every other day, but he still very emphasised the need for a cumulative dose. I'd be interested to read the contrary though, I'm half expecting to need to go back on it, most people I know have been on it twice before it did the job fully, 2 years and counting though fingers crossed!!

There's also evidence that the shorter courses don't work as well long term. The cumulative dose regime appears to have a lower relapse rate.

That’s a very high dose. I struggled with 30mg but dropped it to 20 and that was fine

Has it ever stopped anyone's periods? My dermatologist said it has no link but it's so strange how the 1st month I started Roaccutane was the last time I had my period.

I have my next blood tests later on today, I can't imagine them to be healthy with how I'm feeling. I go on holiday in January to Australia so I'm hoping I'm off them for at least December!

Slightly worried about the relapse rate for high doses!

80mg is an incredibly high dose. No wonder you feel awful. Call your dermatologist and explain how bad it is. It’s irresponsible to leave on such a high does with those side effects.