Accutane experiences?

[MEmama]

Does anyone have experience with Accutane for severe acne? 

[Plateau Mama]

What do you want to know?  I have taken it twice.  Once as a teenager and once as an adult.

[regentrude]

Worked great, no side effects. Finally did it after many many courses of antibiotics that were useless. I regret my hesitation and wish I had done it years earlier.

[EmilyGF]

Exact same experience as @regentrude. Very glad I did it.

Emily

[saraha]

Did 21 just did it After fooling around too long with antibiotics. He had stomach issues for the first month, after that the only side effects he had was very dry skin and peeling lips. Once he was done with it that went away

[MEmama]

20 minutes ago, Plateau Mama said:

What do you want to know?  I have taken it twice.  Once as a teenager and once as an adult.

The dermatologist wants to prescribe it for DS and I’m a bit concerned about the potential side effects. I’m hoping to get a sense of others' experiences before we dive in. 🙂 

[Corraleno]

DS did it a few years ago. It gave him extremely dry skin and split, cracked, swollen, peeling, bleeding lips. He had special medicated lip balm but it was still so so bad.  Accutane interferes with the body's ability to heal itself, so every zit ended up looking like a big bruise that seemed to last forever — you really can NOT pick at your face when you're on Accutane. DS looked terrible for a while, and then it gradually cleared up. I can't remember how long he was on it altogether —  6-8 months maybe? And then about a year after he completed the treatment the acne came back, although not quite as bad as it was before. He is contemplating another round, but at a much lower dose.

One thing I wish I knew before we started the treatment is that you can do a lower dose for longer and get the same result as a high dose for a shorter time — the goal with Accutane is to get to a specific cumulative dose per pound of body weight. So usually you start at a low dose and then ramp up each month until you hit the highest dose you can tolerate, and then stay at that dose until you reach the cumulative total they calculate for you. I guess maybe because a lot of people just want to get it over with as quickly as possible? But if DS does do another round of treatment we will go with a much lower dose over a longer period of time in the hope of avoiding all the unpleasant side effects.

ETA: You have to have a blood test every month to check for liver damage, and at one point DS's blood test was concerning so they backed down one level in dosage. 

Edited November 17, 2020 by Corraleno

[CTVKath]

I've taken it twice - one as a teenager and once as an adult. It worked and the only side effect was skin dryness.

[rebcoola]

I took it as a teen.  I had to come off of it because I became depressed.

[MEmama]

2 hours ago, Corraleno said:

DS did it a few years ago. It gave him extremely dry skin and split, cracked, swollen, peeling, bleeding lips. He had special medicated lip balm but it was still so so bad.  Accutane interferes with the body's ability to heal itself, so every zit ended up looking like a big bruise that seemed to last forever — you really can NOT pick at your face when you're on Accutane. DS looked terrible for a while, and then it gradually cleared up. I can't remember how long he was on it altogether —  6-8 months maybe? And then about a year after he completed the treatment the acne came back, although not quite as bad as it was before. He is contemplating another round, but at a much lower dose.

One thing I wish I knew before we started the treatment is that you can do a lower dose for longer and get the same result as a high dose for a shorter time — the goal with Accutane is to get to a specific cumulative dose per pound of body weight. So usually you start at a low dose and then ramp up each month until you hit the highest dose you can tolerate, and then stay at that dose until you reach the cumulative total they calculate for you. I guess maybe because a lot of people just want to get it over with as quickly as possible? But if DS does do another round of treatment we will go with a much lower dose over a longer period of time in the hope of avoiding all the unpleasant side effects.

ETA: You have to have a blood test every month to check for liver damage, and at one point DS's blood test was concerning so they backed down one level in dosage. 

Thanks. This is really informative.

[MEmama]

36 minutes ago, rebcoola said:

I took it as a teen.  I had to come off of it because I became depressed.

I’m definitely concerned about this. I guess a benefit to doing it now is that least DH and I are home all day with him so we can keep an eye out for any mood changes. I once had an adverse side effect on an antibiotic that made me depressed and suicidal so I’m pretty aware that any medication can have serious consequences. 

[Corraleno]

54 minutes ago, rebcoola said:

I took it as a teen.  I had to come off of it because I became depressed.

Yeah, I forgot to mention that this was a significant issue for DS as well. He is prone to depression and has been on meds for it on and off, but Accutane definitely exacerbated it. Another reason he would have to do a much lower dose next time, especially if he's away at college when he does it.

[Nart]

I spent years going to different dermatologists from age 12 to 27. My parents first spent a significant amount of money and then I did treating my acne. Finally I went to a dermatologist who would prescribe Accutane. That dermatologist wondered why I waited so long. Cynically, since my acne was completely cured, I think some dermatologists would rather not lose patients and will keep prescribing lower level treatments. I really regret having to wait so long. I think having acne really affected my mood and confidence. I really wish I had taken it as a teenager. I will not hesitate to find a dermatologist who will prescribe Accutane if either of my boys have significant acne. 

[saraha]

We had no issues with depression. I just asked ds what was the worst about it, he said that it was tied. The stomach issues I guess were pretty bad, but short lived. The peeling lips didn’t feel bad but said he felt like he looked awful as they really peeled. Overall he said he was definitely glad he did it as it made a huge difference in how he looked

[NewIma]

I took it as a teen 20 years ago. I had extremely dry skin for 6 months and then amazing skin after that.  Right after I finished a news story came out about a teen who committed suicide while on it so my parents didn't let my younger brothers take it. Both of my brothers have severe physical scarring and suffered a lot during their teen years from the appearance of their skin. Having seen both sides, if my kids end up developing cystic acne I would put them on it immediately and then closely monitor their mood. 

[EmilyGF]

30 minutes ago, Plum said:

Dh took it as a teen and had the rare side effect of permanent hair loss. We’ve tried everything for middle son. He thought about taking it but the regular blood draws had him saying no. 

I remember my first regular blood draw. I was terrified. I was literally wailing so much that they did the blood draw from my finger. By the end of the six months, I had lost all fear of needles. I am very glad I got over that. I consider it a plus of that time. 

Actually, when we told later techs about the first tech taking blood from my finger, no one could figure out who had done that, as it broke basically every protocol at the place. I am so happy that someone did that for me.

Emily

[Corraleno]

1 minute ago, EmilyGF said:

Actually, when we told later techs about the first tech taking blood from my finger, no one could figure out who had done that, as it broke basically every protocol at the place. I am so happy that someone did that for me.

All of DS's blood draws when he was on Accutane were from a finger stick, so maybe it's common practice now?