Jollyhohnson

Roaccutane on the NHS: A UK Blog

72 posts in this topic

Yep, it's another Roaccutane blog. However, seeing as the experience of seeing a dermatologist and getting a prescription works very differently in the UK I thought it would be worth recording the experience - hopefully it will be helpful to others. UK based product recommendations are appreciated.

To begin, I'm a 26 year old woman. I started my course of Roaccutane yesterday. It was not an easy decision, but after my mental health started to suffer following a particularly bad breakout which left me with permanent scarring I decided that the two dermatologists who had recommended the treatment probably knew best. Also, six months of being dairy-free and mostly sugar free had achieved nothing except cravings for cookies and pizza. I'm going to skip my personal bio for now (if you want to read about it I'll stick it at the end of this post) and go straight to the main story:

In May I got referred to the dermatologist and made an appointment with the NHS treatment centre near me. My appointment was in September!!! Yep, it can take that long to get an appointment through the NHS. My appointment then got cancelled and rescheduled for November due to the Dermatologist taking a leave of absence. At this point I considered going private but it is VERY VERY expensive. However, instead I rang the treatment centre a couple of times to see if they had any cancellations and if I could get an earlier appointment. The first time I rang I managed to get my appointment moved to October. Better, but not brilliant. But then this Monday when I rang they said they had an appointment on Wednesday (yesterday), and I took it. Over two months earlier than my original appointment!! So lesson number one, it's worth ringing and checking for cancellations because it might happen.

When I originally made my appointment I really wasn't sure about Roaccutane. I still believed that had to be an alternative. But with only two days to wait I didn't have time for second thoughts. When I went to see the dermatologist he really helped put me at ease. Unlike private dermatologists, dermatologists working for the NHS don't profit from prescribing treatments. I had previously seen a private dermatologist for a free consultation. He also prescribed Roaccutane, but charged lots of money for each monthly appointment. At the NHS treatment centre we talked about side-effects, the length of the course, and expected results and he was happy to give me the time I needed. Once I said yes, I had to do a pregnancy test (Roaccutane can harm an unborn fetus, so getting pregnant is a serious no no). You also have to do a blood test, but I had already done one earlier so this wasn't necessary. I then got my prescription, easy as that.

I'm starting on 30mg a day. It's a pretty low dose, but the dermatologist said the dose will increase as long as I seemed to be tolerating the drug ok. You must take it with a meal, so I take it with dinner. That's it so far, but I will keep you updated.


Personal Bio:
I started getting acne when I was about 14. People say you'll grow out of it and that's what I believed. At 16, when it became very evident that Clearasil did nothing, I got a prescription for clindamycin, a topical anti-biotic. It helped quite a bit, but never entirely eliminated my acne, which I continued to live with. At 17 I started the contraceptive pill, which I guess probably helped a bit too. But I didn't grow out of it. At 20, a brief break from the contraceptive pill (miscounted the packs I had when I went abroad and missed a month) led to a bad breakout. The doctor prescribed Epiduo ( a topical benzoyl peroxide and adapelene cream) and an oral antibiotic called Tetralycine. This led to the WORST breakout of my entire life. Plus the Epiduo stung really bad. I stuck with it and eventually after three-four months my skin cleared up. In fact, my skin was the best behaved it had been in ages, although I did still get some spots. I continued with this treatment for many months, eventually weaning my skin off Epiduo (I was worried about the long term use of a cream that's not really meant to be good for your skin). I'd been left with some indented scarring, mainly on my forehead, but nothing major. My skin stayed ok for a good couple of years, and I could live with a few small spots, although I guess as time went on it was getting gradually worse again. At 25 I was at a routine appointment and my doctor recommended some topical antibiotics. Remembering how they had helped a bit before I said yes. This time it was Erythromycin and Zinc. For the first few months this worked brilliantly. I had lovely clear skin. But after time my skin started to get oily. Although I didn't get any inflamed spots I did start to get blackheads and bumps. Eventually my skin started to look worse than it had before I started using the antibiotic lotion and so I decided to stop using it - the doctor had said that it would probably be a temporary solution. However, after I stopped my skin went CRAZY. My skin went from oily to dry and I had severe inflamed cystic acne all over my cheeks which would itch and sting. This lasted a couple of months. I didn't know what to do. In the end I waited it out. The doctor referred me to the dermatologist but by the time I saw him it had mostly calmed down. I still get small, inflamed cysts as well as other types of spots - usually 8-10 at any one time. Often the cysts don't come to a head but sit under the skin and take forever to go. That outbreak left me physically and mentally scarred. But as you can't treat scarring if you still have active acne I was still left looking for a solution. Hopefully, Roaccutane is that solution.

Edited by Jollyhohnson
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DAY 4
Obviously nothing much to report yet. I don't expect to see any changes until 3-4 weeks into the treatment. I'm actually weirdly looking forward to the dry skin because that will mean it's working.

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DAY 7
My acne scarring looks so bad today. It's bad enough that I still have acne, but knowing I won't be able to do anything about my current scars for over a year leaves me feeling powerless and angry and sad. I hate what I see in the mirror. 
I assume these scars are from the severe breakout I had at the end of 2016/beginning of 2017, but they only really appeared in the last couple of months. I'm not sure if that's because I notice them more without the redness or whether they've actually become deeper. Do scars take time to appear after cystic acne? 

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I recently started Accutane with the NHS as well (23/male). Day 13 today. My waiting time was just over 2 months, which my GP said was quite short in comparison to others. I guess free/subsidised healthcare comes at that cost! Personally I'm just grateful that we have it free in the first place though!

Have you experienced dry face/lips yet? I started feeling that after 3-5 days, and like you I was weirdly looking forward to it as well, to know that the accutane is at least having an effect (I could never tell when I was taking doxycycline/erythromycin). I've also had a really bad initial breakout all over (forehead, side forehead, cheek/neck line) - big inflamed lumps with no head. I haven't broke out like that since I was 16-18.  It's tough but I'm trying to stay positive.

I can relate to the powerless/angry feeling when it comes to scars. I have really bad chest keloid scars that I'm not sure I'll ever be able to get rid of. :smileys_n_people_15:

All the best :)

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DAY 8

I know!! The NHS is the best thing ever, even though the waiting times are awful.

Not yet. Not had any side effects so far. My acne has flared up, but its hormonal and stress related (stressing about acne and scars only leads to more acne and scars to stress about - sigh). The inflamed lump with no head are the kind of spot I get most often, normally on my cheeks. 

I'm sorry to hear about your scarring. Scars are the worst. I'm feeling more positive today but my mood is so fragile.

Just remember that scars, while awful, don't stop you doing the things you want to do in life. This is what I tell myself when I feel sad.

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DAY  10

Over the last few days my face has been getting oilier and it's felt randomly itchy. By the afternoon it starts to look red and shiny too. At the same time it feels kinda tight.  My monthly acne flare up is getting worse rather than going way like normal and I'm also getting the kind of cysts that seem to start in one place and then spread. In fact, it's a lot like the outbreak I had after I stopped using topical antibiotics (a reaction which happened VERY suddenly). So I've been doing some research and I found something both interesting and horrifying: 

"Many patients with acne and rosacea are treated with long-term systemic antibiotics. On occasion, this can cause a shift in the gram-positive flora in the nares and facial skin to gram-negative bacteria such as Escherischia coli, Pseudomonas aeruginosa, Serratia marescens, Klebsiella species, Citrobacter species, and Proteus mirabilis. While infrequent, this shift in flora can result in a transfer of the gram-negative organisms to other areas of the face, causing a new outbreak or flare of existing acne."

This is called Gram-Negative Folliculitis. It causes cysts and pustules, which behave in the exact way that my current acne is doing. So I think I may have Gram-Negative Folliculitis!! Apparently it often occurs alongside Acne vulgaris. 

Fortunately the most popular treatment for Gram-Negative Folliculitis is Roaccutane (4-5 month treatment), because it dries out the place where this bacteria lives. So regardless of whether my non-expert diagnosis is correct, I should already be on the correct path for treatment. Just wish my face didn't itch so much!

Other than that, no side-effects as such yet.

 

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DAY 12

So I reckon Gram-Negative Folliculitis is probably an unlikely diagnosis, although it may be what I had before. Then again, the bacteria that cause acne could also have reacted in a similar way after ceasing the topical antibiotics. I'll probably never know.

As for today, no dry skin or dry lips to report. My face is still feeling itchy and irritated, but it's not dry. There's no skin flakiness. My day moisturiser is oil-free, although my night moisturiser isn't, but regardless of which one I use my face will randomly itch, although it's worse in the afternoons. I find it helps being outside, and it will itch more indoors. Putting an ice-pack against my skin also eases the itchiness, but leaves my skin feeling a little tight.

My scalp is also randomly itchy - not all the time, just some of the time. Maybe that counts as a side-effect?

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Whether or not it's that condition you mentioned above, I still feel like all the antibiotics I've been on over the years has made my acne more aggressive/resilient/resistant. Wish I'd gotten on accutane from the start and avoided all of that!

Also it sounds like your skin is transitioning from being oily to drying up. Mine went through a "confused" phase but has stopped producing oil the last few days (week 3 day 5 today). I've felt random itchyness as well,

Hang in there!

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I got referred in January for an appointment with a dermatologist and had to wait until the 10th of July to see them! Even after waiting 7 fucking months I am then told that I need to wait 2 and half months to go back for another appointment to actually get a prescription for accutane (They had to squeeze me in as well or else i would be waiting until DECEMBER). What a joke after waiting all this time i could have finished accutane with months of recovery afterwards. I have also had such a severe breakout during this whole time that ruined my life and i stopped going outside and became so depressed, something acne has never done to me before, and has also caused tonnes of scarring which i didn't have previously even after 5 years of acne and not even being 18 yet. At least i have finally been given a date but if I had the money i would have 100% gone private if i knew this was going to happen.

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DAY 13

Gah!!! Why won't my face stop itching??!! It's driving my crazy. My skin doesn't look red or irritated, but it just itches in random spots every five minutes. I tried using a different moisturiser today but it made no difference. My skin does look a little drier, well it doesn't look as oily anyway, but I don't know whether that's the Roaccutane or the moisturiser. My lips are drier though. Have invested in several lip balms.

Thanks dw75, glad to hear I'm not alone on the itchiness front. I agree, antibiotics are amazing things, but they're overused and they kill all the good bacteria as well as the bad. I only wish I'd tried Accutane instead and avoided all this awful scarring - though who knows what my initial breakout will  be like! 

Thomas Deven - that's a ridiculous wait time!! You should have complained as I'm pretty sure that's beyond the maximum time limit for a referral. Why do you have to wait another 2 and a half months? I got my prescription on the day, I thought that was normal. Going private is seriously expensive, and there's probably less accountability. I think you're right to wait. I'm sorry to hear that your acne got so bad. I really do sympathise. My face was an inflamed, painful, blotchy, red mess for a good two-three months and it's left me with some pretty serious scars, not to mention the psychological damage. But it doesn't have to ruin your life if you don't let it. I've actually started seeing a counsellor and its been helpful to talk to someone impartial. I'm fed up of hearing people tell me 'it's not that bad, I barely notice it' or 'don't let it worry you, stay positive'. It is bad, it does worry me, and sometimes I need to voice those feelings and not be contradicted.
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I've been getting itches at night. Like I'll find myself rubbing my face with the covers (bad I know). During the day I've been getting them randomly.

Be careful with changing products. i think one reason my initial breakout was worse was because my I changed moisturiser to this really sticky one and confused my skin. After a few days I changed back to my old one. Could just be a coincidence though! I tend analyse things too much...

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I have to wait another 2 and a half months because they need to do the blood tests and that is the only next available appointment for them to see me after i get my blood tests. They could have done the blood tests in the 7 months i waited to see the bloody derm and it also makes little sense to get blood tests two months before getting prescribed the drug since anything could happen to me during that time. I'm hoping this will be the last thing i ever have to use to battle my acne and i hope i wont have a bad experience.

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DAY 14

So today seems to be side effect day. Here's what I've got so far:
1) Dry, itchy scalp (better after rubbing conditioner into my scalp while washing my hair, but still itchy)
2) Random itching on face (although has been better today than yesterday, tried a different moisturiser)
3) Dry lips - only noticed when I smiled and got the tiniest split on my bottom lip - ow!
4) My knuckles also seem a little dry but it's hard to tell
5) A slight tightness over my ribs, especially if I've had my arms raised over my head (e.g. when washing hair)

I visited Boots when I started my Roaccutane course and one of the staff members was so helpful. She gave me a bag full of little samples I could try and I used some of them for the first time today: La Roche Posay Hydraphase Riche during the day - it did seem to help although my face was still itching by the end of the day.

The breakout I had a few days ago continues to stick around. Literally, they're the same spots but they're just not budging. A few new ones too, slowly appearing. Urgh. Cystic acne is the worst. And I'm meant to be going out to dinner with friends tomorrow. 

Also I feel like all I talk about at the moment is my side effects. My friends must be absolutely sick of it, but if so they're very good at putting up with me. Seriously, I have awesome friends. But it's so hard to not think about it when it itches or hurts or whatever. Gonna make a rule not to mention it tomorrow.

Thomas - good luck, I hope it works for you. 

  Edited by Jollyhohnson
Edits to side effects

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DAY 15

So spent much of yesterday googling my side effects and  in the process found lots of horror stories about how Roaccutane ruined people's lives - thanks Internet. However, I do think some of these effects are exaggerated and some of the links seem tenuous. Also, when people argue that Accutane wasn't worth it I seriously think they underestimate how debilitating acne can be. The anxiety I had because of my acne and my scarring was making me lose my appetite, it was stopping me concentrating, it gave me a horrible tightness in my chest and left me apathetic about life. Luckily I only had this severely for a couple of weeks as I immediately sought help (I still get the occasional feeling of panic when I look in the mirror). In fact, starting Accutane was a big part of making me feel more in control.
So in an effort to not freak out about Roaccutane side effects I've instead made up a strategy called 'Accutane or Anxiety??' Basically, the idea is that whenever I read about or encounter an Accutane side-effect (confirmed or claimed) I think about whether this side effect could also be caused by anxiety, had I done nothing about it. E.g. potential hair thinning or loss - common side effect of stress and anxiety; tightness in chest - common symptom of anxiety; IBS - can be triggered by stress and anxiety; nausea and dizziness - side effect of anxiety; loss of appetite - very common symptom of anxiety; muscle stiffness and joint pain - also a potential effect of anxiety. The lesson I've learnt from this is that the best thing I can do for myself is not to worry and take care of myself. Hey, I might even try yoga to help me relax.
Also, it's important to understand the difference between correlation and causality. It's possible that acne may be caused by the conditions people then attribute as side effects to Roaccutane.
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Hear, hear. There are lots of amazing success stories too. I personally know people that have had their lives transformed positively by roaccutane. Stay positive. 

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DAY 20

So at almost three weeks I haven't really got much to report. Acne has got a little worse, but otherwise no different. My face is less itchy than before, but it hasn't dried out like expected. Lips are dry-ish but not very dry. No dry skin on the rest of my body except my scalp. Dry, itchy scalp has been my one persistent side effect, but now that I'm avoiding shampoo and using a moisturising scalp treatment (Eucerin) it's mostly okay.

I've been trying to avoid thinking or talking about my skin too much. I know patience is going to be really important over these next few months. However, going to see if I can get my dosage increased at my next appointment. 
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Good luck!! I'm in my third month of accutane 20mg daily. My doctor wants to do low dose as this is my second course.

it's definitely a roller-coaster ride

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DAY 25

So had my second appointment yesterday. I didn't see the dermatologist. Apparently here you only see the doctor for your first appointment, and then follow-up appointments are with a specialist nurse team. She seemed to know her stuff though. She was happy with my blood test and was satisfied that I was handling the drug well. Side effects are minimal at the moment. So she said she was happy to double my dose. I was a bit surprised because I didn't realise that the dosage would be put up so quickly but she said it should be fine, and if I wasn't comfortable with that I could take less. So I now have my prescription for 60mg a day (btw, I weigh 62kg). And considering that my acne has been getting gradually worse since I started Roaccutane, I well may just take the full dosage and get it over with. 

To save time, I had my bloods taken earlier in the week at my local GP practice - the dermatologist I saw at my first appointment said that I could do this and it would save me having to be tested at the treatment centre. The nurse said that I won't have to have my blood tested again for another three months.

One thing the nurse really did stress was that I needed to be wearing a sunscreen with spf50. I've been using a moisturiser with spf20, but she said it's not enough, even if you're only outside for 10 minutes, even if it seems cloudy, spf50 is a must. 

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DAY 30

So yesterday was the first day of week five and I'm now taking 50mg a day instead of 30mg. I don't have 10mg tablets though, so I'll have to alternate between 40mg and 60mg (which the nurse said is absolutely fine). If it goes ok I'm planning on shifting up to 60mg for the rest of my course.

Skin update: still breaking out. I guess this could be my IB, but as I had a pretty bad stress/anxiety related breakout before I started it's hard to tell. My skin is still not dry, but I switched to using a rich, oil-free hydrating moisturiser when I first started Accutane, so it could be that my skin would otherwise be dry. It does sometimes feel tight towards the end of the day. Same with my lips - not dry, but sometimes a little tight. The moisturiser definitely seems to have improved my overall skin texture though - some of my scars are even less noticeable! Will do some form of product review later down the line, but I'm currently using Cetaphil gentle Cleanser, La Roche Posay Hydraphase UV Rich during the day, and Cetaphil Lotion at night.

Other side effects: Occasional aches or pains but nothing noteworthy or persistant. Scalp continues to be a little sensitive and dry, but I'm not losing any more than I would normally (it's completely normal to lose some hair day to day). Mood is way better than normal actually - although I worry about side effects and whether Roaccutane will work for me or not, in general I'm a lot happier.

A quick word about exercise: I'm a pretty active person and I normally exercise around 3-4 times per week. Running, cycling, circuits, etc. So far I haven't noticed any significant muscle or joint pain, certainly no more than usual.
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DAY 37

Feeling very down at the moment. I'm now alternating between 40mg and 60mg, and if I have no bad reaction after two weeks I'm going to go up to 60mg for the rest of my course. So far, my skin still isn't dry, even worse, it has this terrible red, waxy shine to it. I don't think it's oily - it doesn't feel oily. After washing my face it's sometimes a bit sticky/tacky though. I've been googling it but can't find any reliable information about why my face is like this. Just have to hope it's a phase. Also, my scars are looking worse again. I guess this could be my skin thinning out and getting dehydrated maybe? I'm also still breaking out, though not majorly. Only have two really bad ones, and one of them is an old cyst flaring up again. My face just look really irritated and blotchy - but it's not itchy or sore or dry!! I don't understand at all. My lips continue to be a tiny bit dry and my scalp continues to be sensitive, but otherwise no side effects.
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I found eating walnuts and taking omega suppliments helped me stay hydrated (as well as vitamin E for obvious reasons, walnuts for oil and good fats, as well as omega's for the inherent benefits).

Assumingly you're not allergic to fish and nuts, this could be given a try?

Stay focused and upbeat :)

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Isotretinoin 40mg daily - oily skin + persistant mild adult acne

Morning

Demol 500 to cleanse
Dermol 500 to moisturise
 

Evening

Demol 500 to cleanse
Dermol 500 to moisturise

Lips:
Eucerin Intensive Lip Balm
Carmex Cherry SPF 15


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In person, my face looks red/blotchy and you can see the difference at my neck borderline where everything above is red/burnt-looking and everything below is a normal tone. And my derm said scars/red marks look worse while you're on accutane, so don't worry about that. I also think I may have broken out slightly from the increased dose, so that could be another factor

Stay positive. Hope you're feeling better today

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DAY 42

Thanks for all the support and positive encouragement - it really does help alot.

I'm already taking an Omega 3 fish oil supplement, as well as Evening Primrose Oil, and I regularly eat nuts. Maybe this is why my skin hasn't really become dry? That and the hydrating moisturiser I've been using since day one.

The two bad spots have gone, but have been replaced by two new bad ones on the other side of my face - grrrr! Also have quite a few smaller spots around my chin. I've also been suffering from a really persistent headache recently. It's not particularly painful, more of an uncomfortable pressure, but I've had it on and off for almost a week now and that worries me. I've read about Roaccutane causing Inter-cranial Hypertension, and although the likelihood is low it's making me very anxious. I've booked an appointment with my GP on Thursday to talk to them about it and request that they run some tests. In the meantime I might take a couple of days off the Roaccutane, just to be safe.
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Good luck for Thursday. Best to check it out. Could be a virus even. 

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