Last week I went to see my dermatologist. In my previous post I was freaking about my dosage. I had difficulty getting clear. At that moment I already took approximately 6500 mg of roaccutane which was 120 mg/kg for me. So I was in a panic mode thinking is the drug not helping me? Last week I discussed my dosage with my dermatologist. She said to me that they do not dosage like that anymore (here in the Netherlands). She said we just look at the patient en take their complaints in to consideration and if the patient is doing well we proceed with the treatment until the patient gets clear. This means that I will be on R for 8 months and my total dosage will be somewhere around 10000 mg. My dermatologist also mentioned that it is not necessary anymore to stay clear for a whole month to be able to quit. This does not provide a guarantee for staying clear forever. She said you just cannot know how the body will react. The last couple of weeks I finally started getting clear and I am not getting new spots anymore. Just the old ones which are healing. So for everyone who is worried about their dosage just keep on going and be patient. Good luck to all of you.]]>
So I posted on here 5 years ago when I had my first course of Isotretinoin (what seems to be referred to as Roaccutane on here). I’ve been reading over some of my previous posts, and notice how dramatic I was back then with my writing!!
Anyway. You may be wondering what brings me back to this site. Unfortunately, I have started to develop some small boils on my face again. But before this disheartens anyone, I have had a good five years of almost perfect skin. No oil, hardly any spots – one or two small ones every so often. So overall, a very successful first course which has lasted 5 years.
I’ve decided to nip this in the bud early this time, and have booked in to see a private derm to ask for a low dose treatment (I’m thinking 10 or 20mg/day). It’s a tough experience being on this drug, psychologically and physically, but I do think it is worth it. I’m going to argue for a low dose as to avoid some of the side effects. The main side effects I suffered with were dry lips, itchy scalp, dry eyes, and blushing.
So I’m gonna do a monthly blog post, as I think its really helpful to get on board with everyone else and get through the course of treatment.
Would love to hear from others who have relapsed years down the line.
I am a 22 year old female from the Netherlands. I started m Accutane journey on june 4th. This means that I just finished my 5th month. So basically I have suffered from acne since I was 11 years old. Nothing much just puberty and hormones I guess. It was always manageable and it went away by itself (all this years I still continued to have minor mild acne but it was not really noticeable to other people.) But last year I started breaking out with huge cyst on my face and on my back. LOTS OF CYSTS. First I have tried antibiotics but this did not help so I started Accutane. I have noticed some improvement in my acne in the past 5 month but I am not clear yet. I am 55 kg and I have taken my dosage of 120 mg/kg. So my dermatologist prescribed me some more. I am a bit worried because I expected to be clear by now. I still have 3 zits on my back and a couple of small pimples on my face. So I am really worried that Accutane is not working properly. Most of the people are clear by the end of month 4 or 5. Should I just wait one or two more months till I reach 150 mg/kg ? If someone has the same experience PLEASE reply. I would really appreciate that.]]>
Yep derm says thats the tablets working getting all the gunge out of the pores !! but still have to live with this !!! dry itchy skin now & sore lips . . . hoping this outbreak is the only one & the worse is over, mainly on cheeks and forehead at the mo . . . hope everyone in “R” land is coping well & looking positive ) 40mg see if derm ups it to 60mg again on next visit . . .
Wondering if any other peeps are having to go through a “top up” course like me )) made lots of friends 1st time around on here . . . hopefully they’re still spot free . . . lucky devils )))]]>
I did become clear after my treatment & all the side effects I suffered were worth while & only temporary whilst taking it ! during July/August I noticed 2 or 3 spots starting to appear, I was told I would still get the odd pimple but 2 or 3 became 4 or 5 and now 8 or 9 !!! so here I am again on a top up course (apparently 10% of past “R” takers do have to have a top up course) I guess I’m one of the unlucky ones (
I’m straight on 40mg & my derm thinks 1 month will not be enough so I guess at least 2 months if not 3 !! he is hopeful 2 months will be ample !!
Not looking forward to my dry cracked lips and dry itchy eyes & sore nose !!! hoping I don’t get any achy joints again . . small price to pay for clear skin . . . . lets hope this is the final time, derm seems to think as I’m another year older taking it my skin will heal and might outgrown my spots as I’m only just 16 !!
Fingers crossed . . . I won’t be on it too long this time . . . keep posting . . . found this site when I initially went onto the treatment & found it such a comfort & help hearing about others on their journey . . . good luck )]]>
I’ve just found this forum and it seems so helpful! I was hoping someone might be able to give me some advice. I’ve been prescribed roaccutane recently, but I’m really unsure about whether to take it. There is history of mental illness in my family (my dad) and to be honest I’m scared of the effect the drug may have on me, as I know depression whilst on it is quite common. I have had episodes of depression myself in the past aswell. My dermatologist knew this so she prescribed a low dose but I’m still wary!
Has anyone else been in a similar situation?
I just wanted to give my feedback in taking Roaccutane. I have suffered from acne mostly in my mid 20′s and had tried all sorts of topical, antibiotic and expensive laser treatments but nothing really worked. The only thing that kept it under control was being on the contraceptive pill dianette but I had enough of being on the pill so I decided after doing lots of research I would try Roaccutane, I also had 2 friends who had taken it and tey both had quite different experiences.
I have been on it now for nearly 7 weeks, the first 4 I was on 20mg dose and after that I was put on my maximum dose which is 50mg. I’ve been told as long as I can continue with this does ill be on the Roac for 5 months in total.
So far my side affects have been minimal, I had a bit of a bad tummy for the first few weeks, I guess this was just my body getting used to it but that has settled and it didn’t get any worse when my dose increased. My lips are very dry and my skin feels a bit more sensitive, I have burnt myself more easily just under a hot tap and that wouldn’t have happened before. My skin has improved, I haven’t had many spots, a few small ones but no big ones at all. The general texture of my skin is better too and everyone has noticed. Some say it gets worse before it gets better but so far I have not experienced this. I never have to wash my hair too which is amazing, I don’t know if my hair is better because of this or because of roac but that has also been something I’ve noticed. I know it’s common to feel stiff which I was concerned about as I like to exercise a lot but I haven’t felt any different so far. As for depression or feeling low I can only say I am feeling great – this is because my skin is improving and it made me very stressed and low when it was bad. So far so good.
I would highly recommend the La Roche Posay – Effaclar range when you are on roac, it’s amazing. It’s ph 5.5 and great for your skin when you are on this treatment. It’s also not too expensive but worth every penny. Another thing I would recommend is nipple cream for your lips, my sister just gave up breast feeding and gave me hers as its an intense moisturiser, I put it on my lips at night and it really helps.
I hope that has given you a good insight into my experience so far, I will post again when I have more news!
I hope you’re all doing well & I promise you, it’s all going to be worth it]]>
I am new to this wonderful support group. I have been an acne sufferer since my teens. I grew up with little confidence and hated people looking at me. I have tried many different treatment such as antibiotics (topically and orally) but they would work for a period of time and then the acne would return. Eventually I was taking Cilest – oral contraceptive pill as Dianette gave me migraines. Cilest worked for about 10 years when headaches became a problem. I stopped taking it under my doctors advise hoping my skin would be acne free. Unfortunately, it did! I went back to my doctor and he insisted I tried more antibiotics and creams before I could be referred to the dermatologist even though I know they wouldn’t work. Therefore he gave me Lymecycline which worked for about 8 months. I was eventually seen by the locum dermatologist who did not seem to understand my long term problem and headaches with the pill. He started me on Yasmin, another pill as he thinks roaccutane will not work for me! I have been taking Yasmin now for 4 months and my skin is a lot clearer but my other problem is eczema. I requested to see a dermatologist with more experience because I don’t want to take Yasmin. He has finally put me on roaccutance after I explained my long story. I have taken my 6th dose today and at the moment my face is feeling a little irritable. But I am not sure if this is caused my eczema or the drug?? I am still taking Yasmin to keep it under control. I know the dose will probably be doubled in my next appointment and I am really worried about the horrid side effects. So worried that I have already gone and bought cetaphil products and vaseline. I am particularly worried about going to my interviews in about 4 weeks time with a horrible looking face. Is anyone in a similar situation where they are taking the pill to help control acne as well as roaccutane? I don’t know when is the best time to stop the pill. Any ideas??]]>
I haven’t had any side effects (yay?)
- My lips feel a bit dry but I barely need to use chapstick.
- I’m not really breaking out any more than before, but I have noticed one or two spots in areas where I never got acne before e.g. two on my neck (?!) and just under my jaw.
- Eyes are a bit dry but not all the time, and tbh that could easily be due to the hot weather and my contacts (which I still wear with no problems)
- My skin is NOT flakey
- My blood tests were normal – (I had it done twice in the month)
All in all I know I should be happy about the fact I have no side-effects but for some ridiculously stupid reason (and I know I should know better being a med student) I feel like the medication isn’t working if I’m not suffering just like everyone else..
I tried to convince my dermatologist to up my dose, and the most she’d go for was 40mg and even then it felt like I was twisting her arm.
I told her at the start of the treatment that I would be leaving Kuwait next month to go back for my last year of school and that I’d have 2/3months at home. I only just realized today that the dose she gave me would mean I would have to be on the medication for 8 months and seeing as she’s refusing to give me the next 6 months ahead of time, it would mean I would have to stop my treatment for a month or two (till I can get an appointment with a derm in Dublin)
Does anyone know how this affects treatment?
Anyway! I realize this post sounds a bit whingy and I’m sorry! I was just looking forward to starting this medication and now that I feel I’m not on the right dose I’m just a bit disappointed.
If anyone has a similar story where they had virtually no side-effects Id love to hear about your progress!]]>