Has anyone here used, or had their children use, Accutane (Isotretinoin) for acne treatment? My D24 will be starting it soon and I have concerns about some of the side effects (specifically the mood-related ones). Would appreciate any positive experiences you can share, or things to look out for…that sort of thing.
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I hope you don’t mind, but I moved this to the parents cafe.
One of my kids did two rounds of accutane treatment in high school. The doctor very very well monitored this treatment. Kid had high cholesterol which apparently is also a common issue…and liver function was also monitored closely.
Regarding the efficacy…it was terrific, and nothing else really had worked for this kid.
We also had excellent insurance and generic was use so it was something like $10 a bottle.
This was done once during the school year…fall, IIRC. Then repeated after a time off.
No mood issues here.
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thank you! I thought I was posting it there…doh!
Both my son and I did it. We both responded very well. Neither had mood issues. I ended up with a little dry eye. I’d do it again for sure.
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My D21 used Accutane for acne when she was in 9th grade. It was a last resort to clear her acne, but it worked and she has not had issues since. So she is glad she did it.
The only side effect she experienced was dry skin. She has eczema and it caused some issues with that during the five months she was on Accutane. We didn’t notice any mood issues (or more accurately, any change to typical 9th grade girl mood issues. haha)
It is highly regulated so she had to take birth control pills and go to the derm every month to fill out paperwork and get a pregnancy test before picking up the monthly prescription. That was a bit of a pain. ETA after seeing @LeastComplicated 's comment: In our state, a pledge of abstinence did not qualify. A prescription for birth control pills was required.
Three in our family have used it, with no problems except for dry eyes (in a very dry state).
My daughter most recently used it with great results, although be aware that prescribing to females may require monthly pregnancy tests and proof of birth control (abstinence qualifies). Not sure if this is required in all states, but it was in ours.
My S22 used it in Fall 2020 with great success. He experienced some muscle pain during his varsity sport practices and very dry lips, but that was the extent of his side effects. At the time he was also on Wellbutrin for depression and anxiety, so he was closely monitored for mood symptoms while on Accutane. He did not experience any additional or worsened mood symptoms during that time. Since this was fall 2020 we were able to take advantage of video sessions for the monthly meetings with the dermatologist office, which was really nice. Prior to that, our practice would only see kids and parents in person for those visits. Hopefully those practices have adopted the video visits, as it is much less disruptive than getting there in person.
It’s been almost 18 months since he finished his script, and his skin looks fantastic. When we first started I thought he might have some mild “pitting” scars on the side of his face where the acne was worst, but those pits have filled in. To look at him now, you’d never know that he once suffered from acne. I actually think that the acne was taking a toll on his mental health prior to starting accutane. Having a clear face boosted his self confidence and he went off Wellbutrin within a few months of ending accutane. Of course it also helped that 2021 started a turning point in the pandemic with vaccines and a return of many activities.
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Thanks for this thread. My son will be starting accutane soon, so I’m relieved to hear it’s been safe an effective for people.
I appreciate this post! My D24 has been suffering from depression for a while now (maybe covid-related…who knows?), so that’s why I’m especially concerned. I told the derm I needed to think it over/talk to D’s therapist before deciding anything. My D fell apart on the car ride home, and really opened up to me about how miserable her acne makes her, so that’s why I agreed.
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Not a parent but I saw this…I am on Accutane right now! I started end of December, take 60 mg (two pills) a day. My acne wasn’t awful (it was still meh though) just pretty stubborn so that’s why they put me on it. It was mostly maskne (mask acne).
I have not had any mood related side effects to my knowledge…I mean being a girl when it’s that time of the month I might be a bit moody I guess LOL but I don’t think Accutane has affected me in that regard. I haven’t experienced any feelings of depression or sadness, but they do always ask me that whenever I go.
The worst part is the dryness. My lips get SO dry. I never had to use chapstick or Aquaphor any other time in my life until now. Now though, I religiously apply that or vaseline to my lips. My skin has gotten dried out as well, but it’s not that bad. Also, Accutane makes your scalp dry and so it takes much longer for your hair to get greasy. So that’s one perk I suppose! (Although, maybe that depends on the person––I naturally have a more oily scalp and have to use products that dry it out).
It’s cleaned me up pretty well, I don’t have any of those “pitting” scars to be honest. I am still on it, but almost done. I do have some redness though but I have something else they have me put on to help with that. Not at home right now so I can’t check but it used to be prescription and now it’s over the counter. Then I use a basic Cerave cleanser and moisturizer, occasionally the Laniege water sleeping mask (1-2x a week to help with my face dryness).
One of the aspects that sucks is every single month if you’re female you have to go on the iPledge website and fill out a questionnaire. It’s actually not that bad though––questions are common sense…I’m pretty sure if you don’t get them all right you get to retake it, too. But you have to do that before they can send your prescription out. It was a dumpster fire in December when they re-did the whole iPledge system/website (this happened RIGHT when I started and it was a nightmare because I logged on every day within my 7 day window and had to call the FDA) but it’s seamless now. Just have to complete the questionnaire within 7 days. That’s probably been my worst experience so far actually, not the drug itself.
Another common side effect is muscle aches/pains. I feel like I might have had that a little bit, but nothing extreme. I might just be a wimp though, I think I have low pain tolerance. Also, one time my right foot was numb for a couple days (like I had no feeling in my foot??) and I do run track, but I don’t think it was from that. I might have accidentally taken 4 pills or something the one day (there have been a couple times where I think I already took the pills but I didn’t or I accidentally took them twice––definitely not safe but I’m still alive––but around that time I think I took the pills twice so I think it has to do with that). It went away though and I’m fine now.
Honestly though, I 1000% recommend it. I was on other pills before and they all seem to have crappy side effects. Accutane hits people differently so maybe I would feel different about it if I had more extreme side effects, but I wouldn’t let that scare you away. When you start taking it, your skin will get worse––it draws EVERYTHING out. But it eventually gets better. They call it “purging.” Mine was not nearly as bad as some people’s, but I don’t think my acne was super awful to begin with. I wish I got on it sooner, but my theory is that my derm wanted to get more money out of me which is why it took 1.5 years for them to put me on it.
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My daughter has had a couple friends on it. My understanding is that females need to also be on two forms of birth control because of the potential for serious side effects/birth defects if they would get pregnant.
Most conversation I’ve heard lately related to this is about being careful about the bc pill you are on. Teens are talking about it because of recent stroke a celebrity’s wife had (can’t remember who).
I’m not a medical professional just thought I’d comment that it is perhaps something to ask about.
My son’s side effects have been dry skin and hair loss.
Isotretinoin and other retinoids during pregnancy | March of Dimes describes the need to avoid pregnancy when using Accutane / isoretonin, including the potential birth defects that could result if one gets pregnant when using Accutane / isoretonin.
Note that other retinoids (as listed on that page) can have similar risks to pregnancy. As the page also notes, large amounts of vitamin A can have risks to pregnancy.
The page also says that “Men who take isotretinoin can have a very small amount of it in their semen (fluid that contains sperm). Experts don’t know if semen with isotretinoin can lead to birth defects. If your partner takes isotretinoin and you’re pregnant or planning to get pregnant, talk to your provider. Use a male latex condom every time you have sex to help prevent pregnancy while your partner is taking isotretinoin and for 1 month after he stops taking it.” I.e. men taking Accutane / isoretonin need to be aware of this issue.
D1 had very bad acne when in high school. I didn’t want her to go on Accutane because of side effects. When D2 started to have bad acne, her derm strongly suggested for her go on Accutane. We were living outside of the country at that time. The doctor put on her on a lower dosage and for longer period time. She didn’t have any side effects other than dry nose and mouth. The treatment was very effective.
When D1 saw how good D2’s face looked she started Accutane treatment in her mid 20s. She also didn’t have any side effects and her face really cleared up.
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My son used it in high school. He’ s now 22. It did wonders. No mood side effects. He did experience the dry skin/chapped lips. His dryness was pretty bad (flaky, plus super chapped lips, not great looking!!), but that is temporary just while you are on it, and the clear skin is long-lasting, so a definitely worthwhile trade-off in my book!
I will say that his skin was near perfect for perhaps 2 years, and now he has some acne again. It’s not awful, but I was bummed to see it return. I’ve heard that when that happens, you can go back on, perhaps for a reduced course, I’m not sure because he doesn’t want to.
Because of the liver side effects, my understanding is that it is super important to not drink alcohol during the months that you are on it. So it seems a good idea to get it done before your kids start going to any drinking parties if that’s something they might end up doing.
Good luck!
Yep, they make you select 2 forms of birth control, or you can pledge abstinence as your birth control.
Concerning birth defects, this is what it says in my patient portal:
“Isotretinoin must not be used by patients who are or may become pregnant. There is an extremely high risk that life-threatening birth defects will result if pregnancy occurs while taking isotretinoin in any amount, even for a short period of time. Potentially any baby exposed during pregnancy can be affected. There are no accurate means of determining whether an exposed baby has been affected. Because of this toxicity, isotretinoin can only be marketed under a special restricted distribution program. This REMS is called iPLEDGE®. Under this REMS, prescribers must be enrolled and activated with the iPLEDGE REMS and can prescribe isotretinoin only to enrolled patients who meet all the requirements of iPLEDGE. Isotretinoin can be dispensed only by pharmacies enrolled and activated with iPLEDGE. Enrolled and activated pharmacies can only receive isotretinoin from wholesalers enrolled with iPLEDGE.”
Also, with the side effects:
"Patients on isotretinoin have been known to become depressed or to develop other serious mental health problems. Some people have had thoughts of hurting themselves or putting an end to their own lives. Some people tried to end their own lives and some have ended their own lives. There have been reports that people on isotretinoin were aggressive or violent.
Isotretinoin use has been associated with pseudotumor cerebri, a condition caused by increased pressure on the brain. This condition may occur more often in patients also taking tetracycline. Patients should be aware of other serious side effects, including problems with the skin, pancreas, liver, stomach, bones, muscles, hearing, vision, lipids, allergic reactions, blood sugar, or red and white blood cells. The most common, less serious adverse events include dry skin, chapped lips, dry eyes, and dry nose that may lead to nosebleeds. Patients should be advised about these adverse events and routinely monitored by a doctor during treatment with isotretinoin."
Before going on it, they draw blood and make sure your liver is fine. I had blood drawn at two different appointments.
S was on it after exhausting all other methods/meds to control his (hereditary) cystic acne. He initially had headaches, and his dermatologist took him off for 3 months, then started again at a lower dosage. He was still on it when he started college, so we had to arrange for the student health center to do his blood testing & send to his dermatologist. He had dry skin/lips, and he still has funky sweat glands. He would do it again in a heartbeat.
3 of my brothers had horrible acne, and it absolutely contributed to my older brother’s depression. Unfortunately, although my parents took him for every available treatment, nothing worked. My younger brothers were able to benefit from Accutane, although they were older when it became available; one had to go through two courses of treatment. When I asked them about side effects, both said that the depression associated with bad acne is a very real thing - they considered the possibility of Accutane side effects less concerning than the reality of their mental suffering from acne.
S has two friends who have Crohn’s that surfaced a bit after they completed Accutane treatment. It could be purely coincidental. However, I know that my youngest brother was diagnosed with Juvenile Diabetes not long after he had mumps & measles concurrently … the pediatrician said that he had a genetic marker whose switch got flipped when his body dealt with the illnesses. If it was related to using Accutane, I suspect that may be what happened with S’s friends. If not then, they may have gotten diagnosed at some other stressful time in their lives.
I had a 5-month course of Accutane almost 30 years ago, and it worked like a charm. I did have side effects, but they were manageable - my joints ached, my skin was dry and flaky, and (bizarrely) my straight hair became noticeably wavy, though it went back to normal after the treatment. There have been no long-term effects, and I would not hesitate to use for my own kids now if needed.
My son went on a high dose course when he was 15 1/2. His skin cleared up, and he probably hasn’t had another pimple to this day. (He is now 19.) He had very dry skin and lips while taking the medication. The surprising side effect for him was that his hair became extremely curly and stayed that way for another two years, at which point his hair dramatically thinned. Maybe the thinning was genetic, as a receding hairline is definitely a thing in our family. He now has much thinner hair with some curl/ wave. Before Accutane he had straight hair, so this is definitely something to take into consideration.
I took accutane 25 years ago. I remember doing this in the winter when the sun wouldn’t be so harsh on my skin, which became very sensitive. I did have dry skin, and if I remember correctly, I think my cholesterol levels went up (near 200) when doing my occasional blood checks. Other than that, my acne cleared up and I am glad I did it. I had the painful cystic-type acne.