10 replies to this topic

[luckyme24]

Hi Everyone,

I've been a lurker on this forum for about a year but have suffered with acne for about 3 years since stopping the contraceptive pill Yasmin. I stopped taking it because I didn't like how it was making me feel - was previously on it for about 4 - 5 years, anyway since stopping i got acne around my chin and forehead, i've since the last year also developed some acne on my back.

At first I wasnt bothered by the acne and could hide it with make up and I thought i'd wait it out but 3 years post yasmin and my acne is even worse! I'm fast approaching 25 and it's becoming a major issue for me.

I've tried nearly everything possible for lotions, creams, washes and natural remedies and also lots of vitamins, changed my diet completely, started exercising regualrly, i'll admit this helped but it seems to only last a few months and then i'm back to full blown acne.

Admittidly I don't have acne all over my face, some would say it's not very severe at all but it's the red imflamation that gets me, it hurts to look in the mirror, I struggle to leave the house on a night out and it has majorly affected my self confidence, 3 years ago I was able to go out without having to plaster on thick makeup, now I can not even answer the door without feeling very embarassed!

I've visted the dermatologist 3 times before finally deciding to take Roaccutane - for me this was a real last resort, having read lots of reviews some good some bad, I was scared and had no idea what to expect. I talked through the side effects with my dermatologist and finally made the decision to start Roaccutane.

So here is my log and I hope that this will help anyone considering taking Roaccutane to make the decision, I understand how hard it is to make that decision when you see bad press/bad reviews and I wanted to give an honest account of how it's been for me so far..so here we go!

Starting Dose 20mg

First few days - When I took the first pill I did get quite a bad head but not sure if this was due to not really having much to eat, this dissapeared the morning after

First week - My skin began itching and I did develop a few extra spots around my chin, they are more painful then the spots I would normally get. I also noticed my hair starting to shed - I need to add that the hair shedding may not be related to Roaccutane, it's something I never paid any attention to pre Roaccutane so I will never know.

Second & third weeks - Not very much to report, my hair continuing to shed, It's not massive loss of hair proabably 50 - 100 per day, more when i've washed my hair but I have noticed that if i run my hands through my hair i'm gettng a few strands come out throughout the day. My lips are slightly dry but have been using Vaseline and this was enough to stop them from cracking. Starting to notice dry patches on my face - on the second and third week noticed that I had what looks like Eczema around my mouth on one side but have been using a good moisturiser.

Forth week - Still noticing the shedding of hair, I dont know if i'm just being a bit paranoid, I know i'm driving everyone at home and work crazy with this! I have started to notice that I am getting a rash behind both ears - seems like eczema to me but not sure - it's not painful I can just feel the skin is a little dry. The rash on my face seems to have died down a little bit too.

Went to see my Dermatologist this week - blood results all absolutely fine (I work for the NHS so I get my blood done at work, so I actually get to see my blood results as I take them to my derm appointment - so I know i'm not being fobbed off when they say all fine as I actually see the peice of paper ) - Told the dermatologist I was a bit concerned about my hair - she reassured me that it's very uncommon she say's she's never seen anyone loose their hair completely - I took this with a pinch of salt - I will still keep monitoring for myself and if I feel it's gettin worse I will stop.

Anyway my dose has gone up to 40mg per day I was told if we wanted results i'd have to go up a dose, I was relluctant to go up to a high dose but I have done.

This is my first week on 40mg and 5th week since starting treatment and I wouldnt say i've developed any new symptoms, the one thing i have noticed though is that i'm probably a bit more thirsty and my lips are getting more dry, i'm having to top up the vaseline.

That's it for now...I'm sorry if i've rambled on...I wont write so much next time but felt I should put my back ground info in. Please post if you can relate to any of my symptoms or just want to ask questions, i'm happy to help or support anyone else going through this and would be nice to speak to people in a similar situation

P.s - has anyone else experienced hair shedding? I just feel I need to be put at ease as it is the one thing that is making me want to quit, I really dont want to quit but not sure my self esteem could handle another battering x

[BMarieWantsNoAcne]

I've read about some people who experienced hair loss. After washing my hair yesterday I seemed to lose more than normal, but I'm probably paranoid good luck!

[ughhhhh]

I have been 'noticing' some loss as well, but then I remember making pictures with my hair on the walls in the shower years ago, I think I naturally shed a lot. Trying to stay positive cause really at 20mgs? When I'm not even dry yet? I would try not to worry.

[Andychan]

Hi all! I'm on my 3rd week and I will see my dermatologist in 2 weeks time. Should I have my blood test 1 week before the appointment or after I have to see my dermatologist first ? Thanks!

[Seanagins]

I'm not attempting to take place of your health care physician, but would like to warn you that if you start to notice any health problems to discontinue accutane. There are more options than accutane. Problems to be aware of are and not limited to Irritable Bowel Syndrome/Movement, Gastrointestinal Tract problems, and back problems.

[teresa*]

Hey! Your acne sounds quite similar to mine. Im 6 weeks into my course. Just wondered, Im not having a check up until 7 weeks in (next week) and its not even with a dematologist, its with a dermatology nurse. And the next check up after that is in april next year - thats with the actual dermatologist. Does that sound normal to you? Im from the UK too and saw from your log you had a check up after a month. Got my first bloods done this week in preperation for next weeks appointment.

Personally I haven't experienced any hair shedding, it actually seems stronger now than it was before accutane!! Plus im washing my hair just once a week now as its not getting greasy at all on accutane so I think that helps as hair is weaker when its wet isnt it?! With the lips, if you find vasaline doesnt cut it anymore, try elizabeth arden 8 hour cream!! Its amazing, my lips look completely normal when I use it theres a massive difference compared to vasaline

[Hum12]

Hey! Your acne sounds quite similar to mine. Im 6 weeks into my course. Just wondered, Im not having a check up until 7 weeks in (next week) and its not even with a dematologist, its with a dermatology nurse. And the next check up after that is in april next year - thats with the actual dermatologist. Does that sound normal to you? Im from the UK too and saw from your log you had a check up after a month. Got my first bloods done this week in preperation for next weeks appointment.

Personally I haven't experienced any hair shedding, it actually seems stronger now than it was before accutane!! Plus im washing my hair just once a week now as its not getting greasy at all on accutane so I think that helps as hair is weaker when its wet isnt it?! With the lips, if you find vasaline doesnt cut it anymore, try elizabeth arden 8 hour cream!! Its amazing, my lips look completely normal when I use it theres a massive difference compared to vasaline

Hi hun I am from the UK to and from what I am aware of you MUST visit the derm for monthly blood tests its mandatory I am also on roaccutane at 20mg my derm said the same thing about going on to 40mg to see results however my main concern is my period I have not received it since being on he treatment has anyone else experienced this?? It's the only thing that is putting me off a higher dose

[teresa*]

Heya, well I've had one set of blood tests the other week and everything was fine, but saw the dermatology nurse and she said I wouldn't need to take another blood test until after I've finished the course in april. I wonder why they are being so relaxed about it. I've had no problems with my period, no change - accept strangly I'm not getting period pains now. Very random lol. But I hope yours comes soon and everything becomes more normal in that respect. Perhapse its just your body's way of adjusting.

[luckyme24]

Heya, well I've had one set of blood tests the other week and everything was fine, but saw the dermatology nurse and she said I wouldn't need to take another blood test until after I've finished the course in april. I wonder why they are being so relaxed about it. I've had no problems with my period, no change - accept strangly I'm not getting period pains now. Very random lol. But I hope yours comes soon and everything becomes more normal in that respect. Perhapse its just your body's way of adjusting.

Hi Teresa sorry it's taken me so long to reply to your posts!

Do you mind me asking what part of the UK you are from? Not that it makes any difference but as far as i'm aware every dermatologist should be making you have monthly check ups - not only to check on your progress and monitor any possible side effects but since there is a warning on the packet regarding pregnancy they have a duty to do a monthly pregnancy test before prescribing you your Roaccutane - as females we should only be receiving one months supply.

It's also so important that they monitor any side effects you may have from taking Roaccutane and that they take the appropriate action.

I've just had my 2nd check up with nurse - I spent an hour with her she went through all of my side effects and concerns plus she also asked lots of questions a few were any joint pain? How long were the spots i'm getting now lasting, how are my eyes, any skin changes such as rashes etc, mood and she also asked who was keeping an eye on me for possible mood changes.

As i said she was very thorough and i'm grateful for that it just shows that they care about you as a person and not just putting a potentially dangerous drug in your body without a regard for your overall health.

Anyway from that meeting unfortunately my dosage was lowered from 40mg to 30mg - the nurse noticed that my eyes were a little red and also my cholestorol levels were only slightly raised and she wants to monitor these and see if it has an effect by lowering the dosage - she said that it's important to make sure my body is tolerating Accutane, I was a little disheartened but looking back on it it's better to be safe than sorry and take it slowly.

I really would advise you to get in touch with your dermatologist and ask why you are not having regular checks - if i didnt have regular checks i'd be concerned. I dont want to scare you but I do think you should question the dermatologist.

P.s it's standard practice to see the derm nurse once you have had your initial consultation - they are well trained and are often able to spend much more time with you as my nurse was - I have to say the treatment I have received at my hospital has been really good and they always seem to have time to answer my queries.

Keep me updated on how you are getting on x

UPDATE - week 8..... Dosage lowered

See my above post on my recent review with the dermatology nurse my cholestorol level was slightly raised (it really was ever so slightly) and my eyes were also quite dry and red so the nurse decided to put my dosage down from 40mg to 30mg to see how I tolerated the dose.

I actually felt really good on the 40mg strangely it felt better than the 20mg and my hair sheddng had got a bit better although my hair is still very dry!

I spent an hour with the nurse going through all the side effects and she asked lots of questions which I found really reassuring. She also advised me not to shave my legs too often! Which scared me and I told her it's one bit of advise i wouldnt be taking much notice of!
She also said that i shouldnt be colouring my hair!? I cant not colour my hair! - Does anyone else colour their hair?

As for side effects - My lips are definately more dry although Vaseline is doing the trick. I wake up most mornings feeling dehydrated. My hair is extremely dry and i've noticed that when I do get spots they last a lot longer! It's so hard not to pick too! Oh yeh and my skin's very dry in places my scalp is no longer flakey which it was in the first few weeks.

I sometimes get tired easy and my joints do hurt like my ankle and knees sometimes its hard to get up in the morning when i'm v tired.

My skin has definately improved just within 2 months people are starting to notice how it has cleared up - although i've just got a bad break out i think it's because i've eaten so much chocolate in the past week!

Will be interesting to see what happens whilst i'm on the 30mg dose as when i was on 20mg i couldnt really see much improvement but since being on the 40mg (last 4 wks) i've seen a big improvement - i'm a little scared going down is going to bring the spots back - we will see.

x

[Beccabiscuits]

Hey I'm also from the uk, been using roaccutane for about 2 and a half months now.

My ance is on my forehead and chin area, however since taking roaccutane it has appeared on my cheeks. If I'm honest I'm suffering the symptoms, dry skin, lips and joint ache but not seeing much Improvment. I would have thought it should have started clearing by now? My dosage is 20g I asked the dermatologist to up my dose but she said to give it another 6 weeks then she may up the dose. She said it is working, the tablets are bringing the acne to surface before they can clear up. But it's been almost 3 months surely about the 2 month mark they should be clearing? Does it take longer to work in girls?

I've also noticed my hair has became limp and thin.

[teresa*]

Heya, well I've had one set of blood tests the other week and everything was fine, but saw the dermatology nurse and she said I wouldn't need to take another blood test until after I've finished the course in april. I wonder why they are being so relaxed about it. I've had no problems with my period, no change - accept strangly I'm not getting period pains now. Very random lol. But I hope yours comes soon and everything becomes more normal in that respect. Perhapse its just your body's way of adjusting.

Hi Teresa sorry it's taken me so long to reply to your posts!

Do you mind me asking what part of the UK you are from? Not that it makes any difference but as far as i'm aware every dermatologist should be making you have monthly check ups - not only to check on your progress and monitor any possible side effects but since there is a warning on the packet regarding pregnancy they have a duty to do a monthly pregnancy test before prescribing you your Roaccutane - as females we should only be receiving one months supply.

It's also so important that they monitor any side effects you may have from taking Roaccutane and that they take the appropriate action.

I've just had my 2nd check up with nurse - I spent an hour with her she went through all of my side effects and concerns plus she also asked lots of questions a few were any joint pain? How long were the spots i'm getting now lasting, how are my eyes, any skin changes such as rashes etc, mood and she also asked who was keeping an eye on me for possible mood changes.

As i said she was very thorough and i'm grateful for that it just shows that they care about you as a person and not just putting a potentially dangerous drug in your body without a regard for your overall health.

Anyway from that meeting unfortunately my dosage was lowered from 40mg to 30mg - the nurse noticed that my eyes were a little red and also my cholestorol levels were only slightly raised and she wants to monitor these and see if it has an effect by lowering the dosage - she said that it's important to make sure my body is tolerating Accutane, I was a little disheartened but looking back on it it's better to be safe than sorry and take it slowly.

I really would advise you to get in touch with your dermatologist and ask why you are not having regular checks - if i didnt have regular checks i'd be concerned. I dont want to scare you but I do think you should question the dermatologist.

P.s it's standard practice to see the derm nurse once you have had your initial consultation - they are well trained and are often able to spend much more time with you as my nurse was - I have to say the treatment I have received at my hospital has been really good and they always seem to have time to answer my queries.

Keep me updated on how you are getting on x

UPDATE - week 8..... Dosage lowered

See my above post on my recent review with the dermatology nurse my cholestorol level was slightly raised (it really was ever so slightly) and my eyes were also quite dry and red so the nurse decided to put my dosage down from 40mg to 30mg to see how I tolerated the dose.

I actually felt really good on the 40mg strangely it felt better than the 20mg and my hair sheddng had got a bit better although my hair is still very dry!

I spent an hour with the nurse going through all the side effects and she asked lots of questions which I found really reassuring. She also advised me not to shave my legs too often! Which scared me and I told her it's one bit of advise i wouldnt be taking much notice of!
She also said that i shouldnt be colouring my hair!? I cant not colour my hair! - Does anyone else colour their hair?

As for side effects - My lips are definately more dry although Vaseline is doing the trick. I wake up most mornings feeling dehydrated. My hair is extremely dry and i've noticed that when I do get spots they last a lot longer! It's so hard not to pick too! Oh yeh and my skin's very dry in places my scalp is no longer flakey which it was in the first few weeks.

I sometimes get tired easy and my joints do hurt like my ankle and knees sometimes its hard to get up in the morning when i'm v tired.

My skin has definately improved just within 2 months people are starting to notice how it has cleared up - although i've just got a bad break out i think it's because i've eaten so much chocolate in the past week!

Will be interesting to see what happens whilst i'm on the 30mg dose as when i was on 20mg i couldnt really see much improvement but since being on the 40mg (last 4 wks) i've seen a big improvement - i'm a little scared going down is going to bring the spots back - we will see.

x

Hey, Im from surrey. I actually signed a disclaimer to say I would not get pregnant (im single so the chances are zero). Your hospital sounds really good. I had my first check up mid december with the nurse, and it probably lasted just 10mins. She said I'll have another check with her in mid feb, then final check will be with the doctor in april. But she said I wont have anymore blood tests until I've finished the course which I thought was odd. Last blood test, all normal except slightly raised cholestol (only raised by one mark). She said she wouldn't raise my dose as 40mg is reducing the spots and as im 50kg apparently 50mg would be my maximum dose and she didnt think it was worth increasing an getting worse side effects. Mine so far are not too bad, just dry lips and sore knees.

Thanks for your advice hope everything continues to go well for you xx