Accutane experiences?

[mefordis]

We are looking at putting my daughter on Accutane. Can anyone give their experiences, both good and bad? How long was the course of treatment and when did their skin start to clear up?

Thanks so much!

 

[PezRuth]

So my knowledge is very very outdated. I was on Acutane when I was 15/16 which was 30 years ago so take that with a major grain of salt. At the time, generally most doctors would strongly suggest girls/woman on acutane to also be on birth control because of the incredibly bad side effects it can have if you become pregnant. My doctor did not require it for me as there was truly no reason for me to be on it. I did have to have an occasional blood draw to make sure my blood work was okay. The biggest side effect I had was extremely dry/chapped lips. So there are some pretty major side effects for some people but it worked. It worked really well. and it took a month or so to notice a difference.

 

[fab1976]

My almost 16 year old son has been on it since January I think it is. He had a very successful first month, and then it got bad again, and now has started clearing up very well. Another month or two and I think it will be done for him. He had facial, back and chest acne. The back and chest cleared up quick and stayed away. The face took longer, I’d say we’ve been happy with the results for several months now.

The side effects can be harsh. He has had numerous blood work draws done to keep an eye on his kidney function but everything has been fine there. He had some muscle aches and pains but nothing unbearable. He thinks his attention span was affected by it but it’s not an overly common side effect so the doctor isn’t convinced it was from the medication. It may very well be just a teen who doesn’t have good sleep habits honestly, so I’m not convinced on that either. The dryness is real. So dry. His hair texture took a hit, he has to make sure to use a moisturizing shampoo 2 in 1, he’s not a fan of conditioner itself. It took a lot of trial and error to find a lip balm combination that works too, even ones that others recommended didn’t work great. He likes using one at night that I can’t recall right now, and a Vaseline intensive repair one during the day. He also uses moisturizer on his hands.

I think that’s the summary of his side effects! No regrets at all on putting him on it. I did hesitate for a while because it sounds seriously intense, it’s a pretty harsh medication. But oh the before and after is so good! Definitely a boost for a self conscious teen!

 

[fab1976]

So my knowledge is very very outdated. I was on Acutane when I was 15/16 which was 30 years ago so take that with a major grain of salt. At the time, generally most doctors would strongly suggest girls/woman on acutane to also be on birth control because of the incredibly bad side effects it can have if you become pregnant. My doctor did not require it for me as there was truly no reason for me to be on it. I did have to have an occasional blood draw to make sure my blood work was okay. The biggest side effect I had was extremely dry/chapped lips. So there are some pretty major side effects for some people but it worked. It worked really well. and it took a month or so to notice a difference.

It’s actually very much the same still! It’s amazing how long it’s been around for really, and still has the same warning about pregnancy even for boys. My sons doctor was quite serious about that, even as the one who wouldn’t do the carrying of a pregnancy.

 

[kdonnel]

It was very effective but I really think made my daughter math dumb while on it.

It got rid of all my daughters acne. It has been 5-6 years since she took it.

She was prescribed a 4 month course and started the treatment a month before school got out her 10th grade year. When school started back she still a month and a half left to take it. My daughter was one that never struggled in school and math was a subject she enjoyed and found easy, but not the first part of her 11th grade year.

She just was not doing well at all. We paid for a tutor but her test scores went from the low 40's to the mid 50's. She was stressed, my wife and I were stressed, nothing seemed to help.

Then the accutane course of treatment ended.

Instantly her math grade improved to an A and it was easy again. It is not a listed side effect but I really feel like when she was on accutane it affected her brain in a way that made math difficult if not nearly impossible.

 

[PezRuth]

It’s actually very much the same still! It’s amazing how long it’s been around for really, and still has the same warning about pregnancy even for boys. My sons doctor was quite serious about that, even as the one who wouldn’t do the carrying of a pregnancy.

I remember the packaging so clearly. Again 30 years ago but each individual pill on the outside of the packet that you had to open had a picture of a pregnant woman with an x threw it.

 

[mickeyboat]

My daughter took it a few years ago while she was in college. It took about a year for the full course of treatment, she had to do a few blood tests over the course and she had to take monthly pregnancy tests. She was able to a few of those tests at home because of COVID, and was able to do a few of her doctor's visits through telehealth as well. Her skin - especially her lips, was dry, and it seems like she had some minor joint / back pain as well. She had terrible cystic acne on her face before, but her skin looks beautiful, now. She would tell you it was totally worth it and she wishes she had done it sooner.

 

[DisneyCowgirl]

My son used it and his advice to any of his friends who started it was to moisturize and always have chapstick with you. It really worked when nothing else had.

 

[PezRuth]

My son used it and his advice to any of his friends who started it was to moisturize and always have chapstick with you. It really worked when nothing else had.

I remember when I was on it. I think I had like 10 chapsticks in my car at all times.

 

[sam_gordon]

I remember having issues with nose bleeds (constant dry nose) when I was on it in my teens. I don't remember how long I was on it, but it did seem to help.

 

[Trinity88]

My 17 yr old daughter has been taking it for approx 8 months. It did take some time to start working, but now her face looks amazing! I'm assuming she'll stop taking it soon. The biggest side effect, as others have mentioned, is dryness. She had to stop waxing (eyebrows) as it was taking skin off. She uses lots of moisturizer and goes through lip balm like she's eating it. lol But she's very happy with the results.

 

[Dan Murphy]

My son Vince used it, about 30 years ago. Cleared up his face very nicely. And I do recall his dry lips. He always had a tiny jar of Carmex with him. I think he still does. Hope goes well for your daughter, @mefordis.

 

[1420Elexismc]

I was on it in my late 20's...I only dealt with joint pain...I'm 44 and still break out-so do with that what you will lol

 

[Pea-n-Me]

In HS, our pediatrician was concerned my son would have scarring from his acne, so she referred us to a dermatologist who prescribed Accutane. The dermatologist explained that the numerous cysts grow well below the skin and take a while to come up to the surface, so topical treatments aren’t often very effective.

DS had great results within a few months. He went on it in the spring, and by the end of summer he was pretty cleared up. It has not come back in the 7 years since he finished treatment. I really thank our pediatrician for being proactive because his skin looks really nice and has no scarring.

Just to clarify a couple of things. Accutane is a derivative of Vitamin A. Patients taking it have to have their liver enzymes monitored (not kidney). Girls taking it often go on birth control since birth defects can be high while on it. (That would not stop me from obtaining this treatment.) DS and I both were required to watch a training video and sign consents. He was closely watched (by me and the medical team). Federal standards are at play so it’s a big deal, but for him, it was a welcome relief. No regrets.

 

[NotUrsula]

DS took it for a year when he was 15-16; he had really severe cystic acne. In his case Accutane didn't actually fully clear it up, just lessened it enough to get rid of the cysts, and he does have residual scarring from acne; he now wears a beard to cover the worst of them. (His doc, who is a nationally-known cosmetic dermatologist now, said it was one of the most stubborn cases she had ever seen.) His younger sister did not need it, thank goodness. He did have to have liver function bloodwork every month.

We believe that the Accutane probably stunted his growth, as he's about 3 inches shorter than any other male in both families, and his growth did slump for the year he was on it; he didn't grow at all for the duration, but then added another 2 inches shortly after he stopped taking it. (He's not super-short; he's 5'10" now, but the doctor said that odds are that he probably would have been about 6"1" had he not taken it.)

Be aware that insurance often does not pay for it, as it is considered cosmetic, and even in generic form is very expensive. (Seven years ago we paid $150/mo for it with insurance coverage. I just looked it up, and the avg. US OOP cost for it is now about $350-400/mo, plus the costs of the mandatory lab work and office visits that go with it. You definitely want to shop around different pharmacies. When DS took it it could not be filled via mail-order; you could only get 30 days at a time picking it up in person locally; I don't know if that is still true.)

 

[Pea-n-Me]

We spent time looking at before and after photos. They helped DS make the decision to try it.

https://cdcssl.ibsrv.net/ibimg/smb/400x400_80/webmgr/1l/r/v/accutane206.png.webp

 

[LuvOrlando]

Look very closely at the warnings and try to find patient experiences.

We almost did it but then were warned of the neuropsychiatric side effects by a pharmacist who had experienced bad side effects of Post Accutane Syndrome Depression and backed off, went with the creams with oral antibiotics every now and then & it eventually it stopped.

I know of a family who did it for both kids, the girl needed to go on birth control the entire time she took it and both kids had significant behavioral problems from poor impulse control after starting the medicine.

This is a very serious issue so I'm not making light of it, bad acne can also cause Depression but a chemical induced Depression scared me more. One of my kids would want sick days when it would get bad & I accommodated that because I recognize how serious the emotional side can be. It made me sad when events were avoided but my child is ok now so we did the right thing for us. This is a tough issue no-one wants to see someone they love struggle.

 

[Kestryl]

I went on it for 5 (or 6?) months when I was 26, seven years ago, and it changed my life for the better. I sing my praises to accutane. Prior to accutane, I would have multiple pimples on my face at any time, and they were painful. I didn't realize how annoying or prevalent or painful they were until a few months after I finished accutane and my first zit post-accutane popped up. Pimples became (and still are) a rare occurrence now.

I did try several other treatments prior to accutane. Over the counter benzoyl peroxide and salicylic acid, prescription benzoyl peroxide, prescription antibiotics, prescription creams- they didn't work. Tried doing all different kinds of diets- nothing. Accutane was the only thing to work. (The only thing I didn't try, ironically, was birth control- hormonal acne can respond well to that.)

I've got a uterus- I know a lot of people have expressed needing to go on birth control while on it, but my doctor believed me when I said I was practicing abstinence. (I was, I wasn't lying.) The official rule is abstinence or two forms of prevention- typically that's some form of pill/IUD and condom combo. I did monthly blood tests to check for liver enzymes and cholesterol- didn't have any issues. I had some dryness on my face and lips, but for the most part wasn't too bad- just lip balm and lotion up.

My face is typically clear- I get an occasional zit once in a while, but it's not the multiple cystic spots I had been getting before. My confidence is so much higher, and I'm less self-conscious about my face. It's been amazing.

My husband also went on accutane in his early 30s for chest and back acne. His course was 4-5 months. He had some dryness and at one point got a nose bleed, but nothing terrible. And his cholesterol and liver enzymes were slightly elevated while on it, but they came back down once he stopped. And now he doesn't have painful acne that pops and gets blood on his shirts.

Cost-wise, when I was on it, by pill co-pay was $7.50. (Yeah, I know, it was amazing.) It's was around $100 for my husband.

 

[anjuan]

My daughter who is now almost 19 has been on it twice. The first time it did help her acne a lot. However, a few months after she was off she was one of the few people where the acne came back again so she is now on a second course. Some people alluded to it, but there is a Federal program related to the drug called "iPledge" where she had to pledge that she was using 2 forms of birth control and every month had to answer questions online before she could get her prescription. They are very strict about the small window of time she can also pick it up.

As far as side effects go, the lip dryness has been the worst for her. Someone else mentioned the issue with getting their eyebrows waxed. No one mentioned to her that she shouldn't get this done and she had a horrible experience with it. Even with everything, I know she thinks the medicine is worth it because she has beautiful skin now. She only has a month left and I know she'll be glad when it is over.

 

[fab1976]

I remember having issues with nose bleeds (constant dry nose) when I was on it in my teens. I don't remember how long I was on it, but it did seem to help.

Yes! My son needs a nose spray lubricant to help with nose dryness. I forgot about that, I should check if he’s running low and needs more.