Taking isotretinoin (e.g. Roaccutane)

Before starting isotretinoin (e.g. Roaccutane or Accutane), everyone had blood tests to check liver functioning and many of the young women had pregnancy tests because of fetal anomaly risks. People were often given a one month supply as a ‘trial’ to see how they got on with the treatment. Chris had another blood test after this first month. Emma sometimes fainted at the blood tests but says the nurses were nice about it.
Some people were given a few months’ supply of isotretinoin after the ‘trial’ month. Others had to go back every month for the next tablets. 

Often young women did pregnancy tests at each monthly appointment because of isotretinoin risks to the development of embryos/fetuses (unborn babies). Many were given leaflets about these risks and contraceptive options. Naomi had to travel home from university to see her dermatologist. She said it was a “palava” to go every month for pregnancy tests and collect her medicines. Although most found it okay, having to do pregnancy tests could be upsetting, embarrassing and “weird” for those women who were very young and not sexually active. Some young women were also required to be on a ‘reliable’ form of contraception, such as the pill or an implant. Hester took the pill but stopped after a while, as she wasn’t sexually active and had bad side effects from it. Rachael signed documents at the start of her treatment promising she wouldn’t become pregnant which meant she didn’t have to do any more tests.
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Those who saw their dermatologist several times during the course of isotretinoin often found it helpful. Abbie felt good when her dermatologist said her skin was improving. Rachael’s confidence in her dermatologist grew over time. Appointments were often opportunities to check about side effects and talk about next steps. For some people, this meant continuing on isotretinoin for a bit longer than initially expected. Seeing the dermatologist also provided the chance to ask questions. Rachael and Hester both talked to theirs about the risks of drinking alcohol whilst taking isotretinoin and how limiting this affected their social lives. Emma’s confidence grew as her acne cleared though she had worries about scarring – something which her dermatologist offered to help with.

There were some difficulties with seeing dermatologists during treatment though. Naomi found each appointment very emotional and distressing. Some found it difficult to get appointments scheduled because their dermatologists were so busy. Chris liked that he was given an ‘emergency’ phone number to call if he was worried about side effects.

The dosage of isotretinoin tablets taken by each person varied. Chris thinks it depends on the severity of the acne but also the person’s body weight. Often people started on a lower dose (e.g. one a day) and built up to more over a few weeks. Abbie thinks this helped her body get used to the side effects, which eventually went away. Chris started on one a day which gradually increased to three a day. Others stayed on the same dosage, as for Harriet who had one tablet a day throughout her treatment.

Taking the tablets everyday became a routine for most people. Sometimes family members helped remind the person and Emma set alarms to help her remember. Often tablets were taken around meal times, especially at breakfast, as encouraged by doctors. Devan takes his isotretinoin tablets with milk as he read in the information sheet that this would help protect his stomach lining. Rachael and Naomi both pointed out it’s important to pack your isotretinoin tablets when going away.

Most people stopped using other acne treatments whilst on isotretinoin and some changed their skin care routines. Chris and Will were advised by their doctors to stop using face washes as it can be too drying. Ollie kept using an exfoliating face wash. Emma’s doctor recommended she continue with topical treatments whilst taking isotretinoin tablets. Both prescribed and shop-bought moisturisers were used by some people to counteract the dryness from isotretinoin, as were lip balms. Using suncream was also important as the treatment makes the skin more sensitive to the sun and prone to burning. 

Progress and outcomes of taking isotretinoin

The length of time each person was on isotretinoin differed. This depends on how well the drug clears up the acne and what kinds of side effects the person had. Often the duration on isotretinoin was about six months, but could be shorter (Hester was on it for four months) or longer (as for Devan). Shu En moved from taking isotretinoin tablets to a cream version, totalling two years overall, whilst living in Singapore.
The decision to stop taking isotretinoin was usually made by the dermatologist. They checked to see how well the person’s acne had responded to the medicine. Some people had follow-up appointments after stopping isotretinoin, so the doctor could check if the acne hadn’t returned. Emma was reassured that she could get a quick re-referral via her GP if her spots started to come back. 

Sometimes more than one course of isotretinoin was needed. Usually there was a break of at least a few months between finishing the first course and the decision to try another. Emma’s acne came back after her first course and she went on to have a second. Naomi had two courses of isotretinoin to clear her acne, and a third course when it returned after trying the implant (hormonal contraception). A few people had been offered an extra month of isotretinoin even if their acne had mostly cleared up. Chris thinks this can give “peace of mind”. It was reassuring for some to know that they could go back on isotretinoin if their acne came back in the future. Chris felt confident that if his acne returned, he could go back on isotretinoin. Re-starting on isotretinoin could be upsetting though and feel like a “huge step back”, which is what Naomi felt.
Several people found that their acne became worse when they first started on isotretinoin, but then improved as the treatment continued for a few weeks. Some found that their skin continued to improve even after the isotretinoin course stopped.
Most people were very positive about the effectiveness of isotretinoin in clearing acne. Rachael said she was glad she took it and that, for her, it was “not as bad as I felt like it was made out to be”. She says it was a good feeling when she noticed her skin was flat and there were less spots. Some people, like Chris and Alexandra, wish they had tried isotretinoin sooner. Harriet says her skin took a while to “recover” from the dry/thinness after treatment, and that she still has “quite sensitive skin as a result of that”. Isotretinoin also helped reduce scarring for some people, like Ollie. Others used extra treatments, such as Emma who had steroid injections for keloid scars on her chest and Hester who uses BioOil.


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