Hi guys, please could I have some input here, I'm getting desperate!
So after 8 months of spironolactone failing to clear my skin, my new dermatologist decided to go all out and put me on a 10mg course of isotretinoin (accutane). She told me that because my acne was fairly under control (but not clear) I would be unlikely to get much of an initial breakout and that because the dose was so low I was unlikely to get any side effects aside from a bit of dry skin and lips. She also told me that she expected it to get me completely clear within weeks, not months, and that I would definitely be seeing significant improvement by the end of month 2.....
Boy was she wrong!
Despite having a whole host of side effects (dry flaking skin, dry sore eyes, absolutely shredded lips, significant hair loss, muscle and joint aches, etc.) starting from week 2, I have still seen no improvement in my acne. In fact, it's STILL getting worse not better. I know this drug is renowned for having an initial breakout, but I really expected that to be gone within the first 2 months. I feel like my progress (or lack of) is not following the normal pattern here at all. When she saw me at the end of month 1 she said that I look like someone on 40mg not 10mg because of how extremely my body has responded to the drug in terms of side effects and she said that was a really good sign because side effects usually come just before a big improvement in your skin. But that was 7 weeks ago now and my skin is still getting worse..... I'm really starting to despair. 
Can anyone shed any light on this or offer any thoughts or suggestions? Does it really usually take this long to stop making things worse and start making things better? Should I persevere in the hopes that it will work or resign myself to the fact that I'm part of the something like 0.01% of people on the planet that this drug does not work for? Any thoughts would be much appreciated.
Hey MoonlitRiver,
Although I'm only a new member, I'm almost sure I've read every post on acne.org over the last couple of months so hopefully I can help you out and put your mind at ease a little bit 
I've actually only started a 6 month course of roaccutane (isotretinoin) starting on 20mg. So although I haven't hit the side effects stage, I've read up enough on the drug to help you as best I can until someone else with more experience steps in and answers your questions!
You're on a low dosage so perhaps it's taking a little longer for the accutane to work in your benefit and clear your skin! Maybe you need to have a better skin regime aside form the accutane?! Do you cleanse, tone, moisturise every morning and night etc? Your skin might not agree with the products you use and you might need to change them.
And would you consider asking your dermo to up your dosage or are the side effects near unbearable?
25 minutes ago, Moonsss said:Hey MoonlitRiver,
Hi Moonsss, thank you so much for your reply! And welcome to the forum.
I don't tend to tone but I do cleanse and moisturise strictly twice a day (although my dermatologist has advised me to reduce the moisturiser to once a day now because she says too much moisurising sometimes prevents isotretinoin from working as well). I use super gentle products that haven't caused me any issues in the past (Cetaphil) and I'm very careful with what I put on my face in general, including makeup etc. so hopefully that's not where the problem lies.
My derm did give me enough to increase to 15mg this month if I want to but I am being hit quite hard with the side effects (the hair loss is the big one, if it weren't for seeing my lovely hair fall out I would definitely be bumping up to 15mg right now). The issue is that it doesn't seem to be working for my skin. My skin is dry and flaking but it's still breaking out, I don't understand the logic at all.... My derm was convinced 10mg would work for me and that it would work quickly, but I'm in month 3 now and all it's done is given me a load of side effects and made my skin even worse. I don't get it. I know people often get initial breakouts, but it feels like it's been too long for that now so I'm worrying it's just not going to work for me at all.
Good luck with your course, I really hope it goes well for you!
Thanks a mill
I really think you should try and hold out. I really do think it will improve. Maybe increase it for a month and if you really think it's not worth the side effects then maybe just come off it all together! From reading many posts about the side effects etc, it seems like you really have to hop on the accutane train with an open mind and pretty much expect the worst. Acne is such a game of trial and error too... maybe because your dosage isn't a little higher, the dry skin cells could be causing irritation to your acne and therefore making it worse. I really think if your skin is dry you need to moisturise moisturise moisturise... but use a good one! I'm a HUGE fan of the La Roche Posay range and I've just bought this moisturiser today. Its for people that are on roaccutane that need to keep their skin moisturised but not over moisturise it and it will help keep the breakouts at bay. The reviews on it all seem absolutely amazing too so hopefully I can nip the dry skin in the butt early on and try keep it as minimum as possible.
One of my worst fears about going on the roaccutane was hair loss, I really don't think I'd be able to cope.. but then again, I've had bad skin or 12 years and I'm willing to try anything at this stage!!
Is your acne moderate? and what kind of acne is it? Hormonal?
Yeh, I feel like my skin needs a higher dose but the rest of my body can't take it if that makes sense. My dermatologist is convinced 10mg will work for me. I just feel so disheartened that I'm in month 3 and things are still getting worse when I'm doing everything right, I don't get it. My impulse was always to moisturise, moisturise, moisturise.... but my derm told me last appointment that the most common reason for isotretinoin not working as well as it should is because people overmoisturise, so she advised me to cut it down to once a day. I'm trying that this week (even though it goes against my every instinct!) to see if it brings any improvement and I think if it doesn't I'm going to be forced to go up to the 15mg dose, but I'm so scared of what that might do to my hair.
That moisturiser does look good. I'm kind of attached to my Cetaphil because it's served me well for around 4 years and I know for sure it doesn't cause me any problems, but that one looks like a good choice too.
My acne varies depending on what treatment I'm currently on..... untreated it's very severe cystic acne. Under treatment it probably counts as moderate. I definitely felt like it was hormonal because coming off my Dianette pill is what caused this latest deterioration in my skin but unfortunately the spironolactone never managed to clear me over 8 months on 100mg so now I'm not so sure. Just desperately praying isotretinoin will eventually clear me whatever kind of acne it is but so far it's not looking good....
I actually must try the Cetaphil myself... as this is only my second day I have a lot to learn as to what works and doesn't! I know this might sound crazy, but I took my first pill last night (roaccutane) and I woke up this morning with flakey dry skin... I don't know if it's just coincidence but I'm in for a treat if side effects are starting already 
Well whatever you decide to do I hope it works out well for you! For the meantime keep your head up and have faith that it will work. Keep us posted anyway with how your getting on. Hopefully someone with more experience than me sees your post soon and can give you better advice!
Best of luck x
Thank you lovely, I really appreciate you taking the time to talk to me about it. I really hope your course runs smoothly and gets you the beautiful clear skin you want and deserve.
My side effects hit around the end of week 1, but I don't understand the science of it so it might well vary for different people. Definitely recommend Vaseline for your lips and I've also switched from a normal shampoo and conditioner to using just a cleansing conditioner (Palmer's Cocoa Butter one) because my hair's been very dry and frizzy as well as falling out. My hair loves it and it definitely helps with frizz and dryness, but unfortunately hasn't stopped it falling out.... I've just ordered a scalp moisturiser though and am hoping that might help.
Hope you keep us updated too, would love to know how you get on.
Oh boy, I can relate.
I started on 10 mg three months ago and was recently put on 20 mg. My skin has only worsened.I never used to break out on the left side of my face, and now that side is covered with acne. I'm actually pretty concerned that my skin is only going to keep getting worse, but my doctor assures me that this is only the initial breakout because my pores are changing.
12 hours ago, parasect said:Oh boy, I can relate.
Sorry to hear that parasect, but also kind of reassured that I'm not the only one! I thought the initial breakout was supposed to be around weeks 3-6 or something, not week 10 like I'm on.... I feel so demoralised but my doctor is telling me much the same, that it will work and that the turnaround should be soon. Maybe it has to do with us being on such a small dose? I think I might increase to 15mg next week, but I'm a bit scared to because my hair's been shedding loads and I don't want to make that worse. So desperate to see some improvement in my skin though. Just need some hope and some sign it's going to work like she swears it will, rather than just making things worse.
Such a bad breakout this morning, I've literally been crying all morning and haven't moved from my bed. Haven't had ones as bad as this in ages. Why is it still making my skin worse instead of better in week 10?! Can an initial breakout really last this long or is accutane just never going to work for me? Please, any positive input would really help right now, I am utterly despairing. 
Hi Moonlitriver
I'm currently nearing the end of month 5 (around week 19 I think) and only stopped breaking out halfway through month 4. My last cystic spot was about 4 weeks ago and I had a few small spots crop up after but they've now gone. My neck and shoulders were also still breaking out into month 4. Month 5 is the first time I've been completely clear. I too was incredibly frustrated when it took so long to work like I wanted it to but it's definitely been worth it. Like you I started off on a low dose (20mg for 2 months then 40mg for 2 months and now 50mg) and feel that my skin got clearer the higher my dose went but my side effects haven't been too bad so I was happy to go higher.
Sorry you're having such a rough ride with it - just know that you're not alone with it taking much longer to work than you had hoped.
Hope it starts having a more positive effect for you soon
21 hours ago, Coffeeaddict said:Hi Moonlitriver
Thank you so much, it really helps to hear your story and know others have experienced similar disappointments but eventually been successful! So good to hear you're pretty much clear now. Right now I have a horrendous cyst on my forehead and it looks so disgusting, I am so disheartened to be getting this in week 10 when before I went on accutane I wasn't even getting ones this bad at all. I just increased my dose to 15mg yesterday so am really hoping that might make a difference to my skin (without destroying my hair even more....)
Week 12. 15mg. Still making my skin significantly worse not better.
I am so disheartened. My skin looks so much worse now than when I started the drug 3 months ago. Is an initial breakout really meant to last this long?!
Losing all faith that the supposedly amazing drug of accutane is ever going to work for me, all it's done is made things worse and given me a tonne of side effects on top.
Week 16. Had to go back down to 10mg because the hair loss I was getting was genuinely insane. My hair is so much thinner now and it's still falling at a crazy rate. Going to have no hair left at all if I'm not careful.
As for the skin..... still no improvement!!! I want to give up on everything, it is clearly never going to work for me.
I"m sorry it's been so awful for you. Such a let down.
Has your dermatologist ever thought you are on too high of a dose? I'm just wondering because of the severity of your side effects. I have heard/read of some people doing 10mg every other day, or every week. Just a thought.
On 11/11/2017 at 4:03 AM, SkittlesMM said:I"m sorry it's been so awful for you. Such a let down.
Has your dermatologist ever thought you are on too high of a dose? I'm just wondering because of the severity of your side effects. I have heard/read of some people doing 10mg every other day, or every week. Just a thought.
My side effects are dreadful. She thinks when I'm on 10mg my body is responding like I'm on 40mg and when I stupidly upped to 15mg it reacted like it was 60mg. So yeh, she thinks I'm really sensitive to it. Problem is my face isn't. My hair and body can barely handle 10mg (my hair is still falling out like crazy and my ears and lips are so dry they regularly bleed) but my face is still breaking out horrendously in month 5. So I feel like my face needs 20mg and my body and hair can't even tolerate 10mg. I don't know what to do. I can't cope with it not getting better after 5 months. I had so much hope for this drug and after 5 months all it's done is made everything worse.
On 2017-11-13 at 5:02 AM, MoonlitRiver said:My side effects are dreadful. She thinks when I'm on 10mg my body is responding like I'm on 40mg and when I stupidly upped to 15mg it reacted like it was 60mg. So yeh, she thinks I'm really sensitive to it. Problem is my face isn't. My hair and body can barely handle 10mg (my hair is still falling out like crazy and my ears and lips are so dry they regularly bleed) but my face is still breaking out horrendously in month 5. So I feel like my face needs 20mg and my body and hair can't even tolerate 10mg. I don't know what to do. I can't cope with it not getting better after 5 months.
hey girl are you still on birth control? If so, that could be whats causing your acne to be so bad! I had mild acne and every time I tried going on BC pill my skin broke out horribly! Mostly in cysts, which I didn't get before. Im also on 10mg of accutane and have been for 17 days now and I know how it feels to wake up everyday with new pimples :(. I can't even imagine what being on month 5 and seeing no improvement would be like. Im here if you need someone to talk to. I also eliminated sugar, dairy and high carb foods.
On 11/17/2017 at 4:30 PM, Valerie22 said:hey girl are you still on birth control? If so, that could be whats causing your acne to be so bad! I had mild acne and every time I tried going on BC pill my skin broke out horribly! Mostly in cysts, which I didn't get before. Im also on 10mg of accutane and have been for 17 days now and I know how it feels to wake up everyday with new pimples :(. I can't even imagine what being on month 5 and seeing no improvement would be like. Im here if you need someone to talk to.
Thank you for your reply. I'm on Dianette which is what cleared my skin last time. It doesn't seem to be clearing it this time but I don't see how it could be causing it to break out either.... it's supposed to be one of the ones that's really good for acne. I eat a very low sugar diet, no dairy or red meats, low GI wherever possible.... I'm so picky about my food that again I don't see how it could be that. I have a cyst on my forehead right now, at the end of month 5. It's so demoralising. I don't know what I'm doing wrong but I can't keep going like this. I had such high hopes for this drug and all it's done is made my hair fall out and my skin worse.
2 hours ago, MoonlitRiver said:Thank you for your reply. I'm on Dianette which is what cleared my skin last time. It doesn't seem to be clearing it this time but I don't see how it could be causing it to break out either.... it's supposed to be one of the ones that's really good for acne. I eat a very low sugar diet, no dairy or red meats, low GI wherever possible.... I'm so picky about my food that again I don't see how it could be that. I have a cyst on my forehead right now, at the end of month 5. It's so demoralising. I don't know what I'm doing wrong but I can't keep going like this. I had such high hopes for this drug and all it's done is made my hair fall out and my skin worse.
I went on bc when I was 15 and my skin cleared up and then stopped it since it was thinning my hair and then my acne came back around 17 so I tried it again and my face was a MESS and wouldn't clear up again. I also read that some people don't clear up until 6 or 7 months or right at the last month. I really hope things look up for you!
