This is my first post so as a summary, I have been taking roaccutane for 6 weeks now. I have suffered with acne on my face and body on and off for 13 years (I’m 24 years old) so this is my last resort. I wouldn’t say my acne is severe but it is very persistent and I recently started to develop cysts around my jaw which scar quite badly and take a long time to heal.
My first 4 weeks on roaccutane I was taking it at 40mg. I got the usual side-effects – dry lips, dry skin but I have only had a few spots since I started the course – no initial awful breakout (thankfully) but there’s still time for this so not counting my chickens yet! I have also had a dry, flaky scalp which looks like dandruff & is very embarrassing!
The past 2 weeks my derm upped my dosage to 60mg as my side-effects on 40mg were not too bad. Since then my scalp has gotten very sore and painful – so much so that I try and avoid washing my hair for 4-5 days at a time. I have developed achy joints in my knees and ankles but this I can cope with. The very worst side-effect I have suddenly developed is terrible eczema. It started at the top of my arms as an ichy rash, but has now spread onto my shoulders, back and is VERY sore around my under-arms. I’m putting loads of E45 cream on which stings and the rash looks awful, bright red and blotchy. Has this happened to anyone else?
Hi Stephanie,
This is my first post since I started and I am also in my 7th week. I did develop a bit of a rash on my upper arms which I have also read about in other people’s posts. I don’t know what E45 cream is but that’s no good if it stings – I use sorbelene cream after shower and when needed. My derm said hot showers make it much worse and I also take fish oil – are you on fish oil?
I have also the dry flakey scalp which is so embarrassing as I have dark hair. I get cracks at the sides of my mouth which peel every now and then without warning – within minutes of seeing myself in the mirror – and at work of course! I have had sinus troubles since I started, which makes the entrance to my nostrils permanently cracked and peeling and boogerish – people must think I haven’t wiped my nose properly! So I feel like I look really grubby all the time! I suppose it’s the same feeling as having lots of pimples so I should I be used to it…
Still got a few spots here and there and a huge cyst next to my ear which is taking ages to go but I am seeing improvements in the quality of my skin. It’s still very scarred but flatter I guess cos there’s less activity going on. One thing annoying me is that the pores on my nose seem to be BIGGER and it’s really gross, was hoping that they’d be smaller by now but I’m sure they will be in another couple of months.
Hope you’re rash gets better. Please stick with it. I’m 31 and really wish I’d taken this when I was 24 or even 17!
Good luck Stephanie
Eva
- eva on June 6, 2012 at 11:44 am
Hi Eva,
Thanks so much for your encouraging words! After speaking to my derm again, she said the eczema was much worse due to sun exposure. I hadn’t been sunbathing or anything (as I know this is bad whilst on this drug) but I was gardening in a vest top and caught the sun without noticing! I have learned my lesson now & will ALWAYS stay out of the sun and wear sleeves!
E45 is a moisturizer for eczema, but after your advice I have switched to aqueous cream which is like sorbelene as I struggled to find that in the shops. I have also found Sudocrem very good when skin is extra sore. Can’t take fish oil as I’m a vegetarian but I may look into something similar to see if it helps.
I get the cracked corners on my mouth like you do, they’re so annoying! Have you tried Eucerin Aquaphor for this? it’s really good – gets rid of them in a couple of days! The Aquaphor would be good for your nostrils too – it’s clear and long lasting so may improve your symptoms.
I’ve started wearning hats quite a lot now to cover my scalp, I have dark hair too so it doesn’t look great! T-Gel shampoo is quite good but doesn’t smell very nice, what shampoo are you using?
My pores on my nose are also really large – it must be a symptom as I have read a few posts mentioning this!
Glad you are seeing an improvement and hope that cyst disappears soon – as we both know, they always last the longest! I have 2 on my jaw that won’t budge.
I know it will all be worth it in the end, I wish I’s started the course at 17 too – but better late than never : )
- Stephanie on June 7, 2012 at 1:41 pm
Hi Stephanie,
That’s great you found out about the rash and sun exposure – I wouldn’t have thought of that, have you had an improvement yet? And is the change in creams helping? Where I live it’s just coming into winter so I’m rugged up all the time anyway. Although sometimes if my face is in the sun for more than a few minutes it sort of starts stinging and I feel like I’m going to sizzle away like a vampire lol!!!
If you can’t take fish oil definately the next best thing is Flax seed oil which you can get from the health food store from the refridgerated section. Make sure it’s good quality cold pressed and in a dark bottle as it is light sensitive. Vitamin C is a good one to take for lots of reasons too.
I keep hearing about Eucerin Aquaphor but haven’t seen it in the shops yet. I was using Bepanthen on the cracks but that didn’t heal it. My derm prescribed me Bactroban the other day and it has helped like magic. Mouth crack is gone and nostrils are much better. He said whenever I get broken skin to put that on it cos when you’re Roaccutane and your skin breaks it is very slow to heal and you are very prone to staph infections. If that’s what I had I don’t know but it really helped!
I’m using Dermaveen oatmeal shampoo which is fine, smells strangely like almonds though. I use Cetaphil cleanser and moisturiser but the cleanser doesn’t take my make up off so for night cleansing I use Simple moisturising cleanser and that’s really nice and gentle – a good find that one!
As for the large pores, interesting to hear you have that and read about it too, my derm didn’t really know how to answer that question!
Did your derm offer to ‘inject’ your cysts? (sounds so gross!) Mine said once they are opened they go away alot quicker which from experience I can say that’s usually true. Just think, these could be our last ones EVER!
- eva on June 8, 2012 at 12:18 pm
Hi Eva,
Thankfully my eczema has improved a lot since I have stayed out of the sun – the aqueous cream is great too – I only have to use it twice a day and my skin isn’t too dry!
I already take Vitamin C but will definately look for some flax seed oil on my next shopping trip.
If you can’t find the Eucerin Aquaphor in the shops, you could always try online? But if your derm has perscribed something special (haven’t heard of Bactroban before) that is probably the best thing to use!
I would rather use a shampoo that smells of almonds than Neutrogena T-Gel – that stuff smells like tar lol!! I use Simple cleanser and Cetaphil moisturizer which is a really great combination for my skin – similar to what you are using already.
I have my next derm appointment next week so I will ask about the large pores and see if they have any answers and let you know. I haven’t heard about injecting cysts before, what do they inject them with??
Like you say, we probably won’t need that treatment now – looking forward to saying goodbye to the cysts! ; )
- Stephanie on June 8, 2012 at 1:30 pm
hi stephanie,
i had excma too and it was all ove!!! i spent all day in the garden and sun with out realising and when i got out the shower i was covered all over my trunk arms and top of my thighs.
i now only wash with sanex, or oilatum which is a bath oil you can soak in or use it rather than a shower gel. and the follow up with oilatum cream or dermol cream.
this had really helped and the dry patches seem to have cleared up. my nurse said that the skin is super sensative on the tablets so my day of gardening which id usually be fine with made me come out in a huge red prickly heat type rash all up my arms probably due to something in the garden.
eva
i had horrible cracks at the side of my lips and as you say they took forever to heal so i ll ask next week about the cream you tried. ive been usng cold sore cream and antibac cream as well as normal lip balm and they are very sore cracked chapped and almost like a little dip in my skin
lydia x
- lydia on June 18, 2012 at 8:53 pm
Hi Lydia, did you get some Bactroban? Hope it helped
- eva on July 17, 2012 at 11:50 am
Hi Lydia,
I have stayed out of the sun for a couple of weeks now and the eczema has cleared up. After what you have said, there must be a definite link between sun exposure and red blotchy skin! I think I will try oilatum, I have seen it in the shops and wondered if it worked – thanks for the recommendation! : )
- Stephanie on June 19, 2012 at 8:41 am
Hi Everyone
4 Weeks to go
I have had all the symptoms said by everyone, but i have to say it is all worth it. I have been spot free for the past 4 weeks and my consultant suggested I could stop without finishing my full 16 weeks if i wanted. We agreed to finish the course so that i dont risk the return of the acne. I have had acne since I as 7 years old, I have been struggling with all sorts of treatment since I was a teenager nothing has worked. Now im 27 years with two children this was my last resort. This treatment was recommended by my friend since she went through the treatment and had successfull result. Her symptoms where not as severe as mine, I have had aching bones which meant i could not exercise as much as i used too. My back has been painfull on and off, with abdominal pain that come on and off. I was starting to worry but I went for a consultation and was told I could minimise the dosage and take longer. So I persevered by the way I went on holiday to Africa the weather was 19-26 degree each day so I had swelling, red eczema like rash which was sore so I had a break for 3 weeks while there agreed with my consultant. I can honestly say I was really discouraged most of the time but now my opinion is changed and cant wait to finish. I have had all my friends say your skin is wonderful and glowing i am spot free. 4 weeks to go then my dose will be complete. Hoooray hang in the if you can or ask for a lesser dose but the results are worth it.
Txxx
- Thando Jarvis on July 10, 2012 at 6:18 pm
Hi Stephanie, how is your treatment going? And how long is your treatment? Mine is 24 weeks but I don’t think I can make that, I’ll struggle with 20, or even 16! Did you end up finding out aout the large pores? I still have mine, bummer – I thought they would shrink dramatically, not get bigger lol! I posted a bit of a morbid rant earlier so I won’t repeat myself
Hope you are well and not suffering too much xx
Thando – glad you had good results
- eva on July 17, 2012 at 11:48 am
Hi Eva,
My treatment is going quite well now – thank you for asking. Since I have stayed out of the sun, my skin is much calmer. I am not sure how long my treatment will be. I have been taking the tablets for 12 weeks and my derm said they will just assess my skin every 4 weeks to see how much longer is needed. My skin is much improved and my pores have shrunk a little (they are still noticable but not as bad) My new side effect is dry eyes (I’m using eyedrops) and my lips are still very dry and painful but apart from that everything is fine! ; ) I hope you are seeing some improvements in your cysts – Please hang on in there. 24 weeks isn’t that long and just think when that time is over, your skin will be beautiful and you will not regret it! xx
- Stephanie on July 17, 2012 at 12:08 pm
Thanks Stephanie, I’ve just been brought down to 20mg from 60 mg because I was suffering from dizziness, just until I see my derm next week to talk about what to do, maybe a smaller dose for longer?
I’m glad to hear you are happy with your results and may your pores keep shrinking!:) xx
- eva on July 23, 2012 at 11:28 am
Hi Eva,
I have just been to see my derm & he said this month will be my last! In total I will have completed a 16 week course. He said my skin had improved dramatically since my first appointment which was nice to hear. As I look at my skin everyday, I don’t notice subtile changes and improvements – I’m sure you are the same – but other people do! Sorry to hear about your dizziness – I guess this drug affects everyone in different ways, but if you can stay on it at a loer dose for a longer time I’m sure this will be just as effective, if not more so as it will be in your system for longer. Hope your next appointment goes OK and your dosage is decided at the best level to stop those nasty side-effects! xx
- Stephanie on July 25, 2012 at 1:21 pm