I started my Accutane treatment (Isotretinoin) in December of 2019 and my treatment lasted through May 2020. It was a rollercoaster of emotions, not being sure the end result would be worth all the side effects & wondering if all the reports of long-term damage held any water. With this post, I want to walk through my treatment chronologically & at the conclusion, give my thoughts about what I would do differently if I could go back in time.
Prior to Starting
Since I was a teen, I’ve always had mild to moderate hormonal acne around my mouth & chin area. While the acne was never extremely bad or painful, it resulted in a lot of scarring around that area. I tried everything. Every over-the-counter cream, cleanser, medication, you name it. Nothing would work.
Finally, at 25 years old, I decided it was time to rid myself of this teenage acne for good. So I booked an appointment with a dermatologist.
I explained my frustration with the state of my face, and without even hesitating, the dermatologist said “Would you like to cure it for good?”
Accutane was the only permanent solution, he said. Antibiotics and creams only work for however long you use them, & Accutane treatment was the only true solution in his opinion.
He did warn me of the side effects, mentioning that my skin and lips would get very dry and that I could have some joint pain and dry eyes. He also mentioned that there would be monthly blood tests and that I’d need to have 2 forms of birth control throughout my treatment as the medication could cause serious birth defects.
Then we talked about the cost. The medication itself isn’t cheap, but the doctor’s office helped me get set up with a home delivery pharmacy that would apply every discount possible to get the best price. After insurance & discounts, it ended up being around $50/month. But you can’t forget to factor in all of the dermatologist office visits and blood tests into the total cost. In all, I had to visit the dermatologist’s office 9 times during my treatment, each at ~$120 out of pocket. I also had to get blood tests 5 times, each at about $50 out of pocket.
At the time, all of this seemed like a small price to pay to have clear skin forever. So knowing all of this, I decided to move forward with the treatment.
Month One
Dose: 40 mg/day
Honestly, the first month wasn’t bad at all! Definitely was experiencing a lot of dryness on my lips & face, but nothing a little moisturizer & Aquaphor couldn’t fix. The best part about it all was that my skin was the clearest it had been in years. Not a pimple in sight! And because I was shedding a lot of skin on my face, my acne scars started to fade as well. I did notice that it was getting increasingly difficult to wear makeup. Anytime I would try to put on foundation, it would just end up looking worse than my actual skin because of the peeling. So I went without makeup for most of the month, using only sunscreen & occasionally a bit of concealer under my eyes.
Month 2
Dose: 60 mg/day
I could definitely feel the increase in side effects with the increase in dose.
This was the month that the dandruff started to get really bad. I’ve never experienced dandruff before in my life! But it came in month 2 & stuck around through the end of my treatment and beyond.
This was also the month that the joint pain started. It wasn’t anything severe (yet), but I had pain in my hips, knees, and lower back. I kept it under control with Tylenol.
The dryness continued and I learned to take chapstick & moisturizer with me literally anytime I left the house. I also gave up on makeup completely this month, there was no point in trying to put it on if my skin was going to dry out 20 mins later. The silver lining was that my scalp also stopped producing oil. I could now go a full week without washing my hair (no dry shampoo!) and my hair still looked fresh.
At this point, even with the side effects, I was still confident in my decision to continue the treatment. The side effects didn’t outweigh the benefit….yet.
Month 3
Dose: 80 mg/day
ANOTHER increase in dose. This month was bad.
I’d wake up in the morning with so much pain in my hips & knees that I struggled to get out of bed. I couldn’t go on walks or runs around the neighborhood because I’d be in so much pain. I felt like my knees were going to explode. Both of my knees became very swollen. I basically became a vegetable for the majority of this month. Partially because of the side effects and partially because it was March 2020 and well…..ya know.
My eyes also started to get extremely dry during this month. I had to use eye drops regularly. Otherwise, my vision would blur from the dryness. Thankfully I don’t wear contacts so I didn’t need to worry about that.
Oh, and we can’t forget the nosebleeds!! Once or twice a week, I assume from how dry the inside of my nose had gotten.
This was the month I started wondering if I made the right choice. I reached out to my doctor about the extreme pain and swelling knees. At this point, I was concerned that I would have lasting damage. He assured me that there was no evidence that Accutane treatment caused actual joint damage and that the side effects were completely normal for a dosage this high. He advised that if it was ever getting unbearable, that I could skip one pill that day (I was taking two 40 mg pills per day) but that I should only do that once in a while. I took his advice and skipped 2 doses during the rest of the month, only when the hip & knee pain was at its worst.
Month 4
Dose: 80 mg/day
There was a slight hiccup this month. My blood work came back showing that there was something wrong with my liver function. My doctor assured me that it’s nothing to be alarmed by, but we were going to take 1 week off the medication & no alcohol that week (he also advised to avoid alcohol as much as possible during the remainder of the treatment).
After the week off, I had a 2nd blood test which came back normal. So it was back to 80 mg/day. Joy.
The side effects picked back up right where they left off. Hip and knee pain being the worst of it all. The bright side was that we were in full pandemic lockdown at this time. So sitting on the couch all day wasn’t the end of the world…but also not my first choice. I’m a pretty active person so it was hard, mentally and physically, not getting any exercise & allowing myself to become a literal couch potato.
I also started noticing some hair loss this month. I could tell my hair was thinning, and that there was a lot more coming out in the shower & while brushing it than usual.
At this point, I began to regret this decision. I started to convince myself that my acne wasn’t that bad and that maybe this wasn’t worth it. But I knew that I should only have 1 month left to go. I could make it that far, right?
Month 5
Dose: 60 mg/day
I was pretty pleased when the doctor said we could lower the dose. Unfortunately, the side effects did not seem to decrease along with the dose this time around. Joint pain in full force, I was ready for this month, and this entire experience, to end.
I celebrated the last day & was ecstatic for my body to get back to normal.
The Aftermath
Once it was all said and done, I was please for the first few months after the treatment. I had absolutely no acne and the side effects stopped quickly after I stopped taking the medication.
I was assured that the hair loss was temporary, but I don’t think my hair or scalp ever fully returned to normal. My scalp is still extremely dry over 1 year later, dryer than it ever was pre-Accutane. And my hair is still just as thin as it was when I stopped treatment. The excessive shedding has subsided, maybe it just takes time for the hair that I did lose to grow back.
I was also assured that it would not cause any lasting damage to my joints or organs, but the more I read about the medication online, the more I doubt that assurance.
Things started taking a turn almost exactly 1 year after I stopped treatment. The acne returned, in full force. This was frustrating because I spent 5 months in misery only to get 1 year of clear skin!!
I knew that if I returned to the dermatologist, they would try to put me back on the medication for a “maintenance round” and I did not want to go through that again. I heard good things about Retinoids & knew that there was one available over the counter now. So I went to Target and picked up Differin gel. I started using it regularly and in about 2 weeks, my skin was clear again. I’ve been using it 4-5 times per week ever since.
Conclusion
If I could go back, I would request my doctor prescribe me a retinoid first to see if that would work before jumping straight to Accutane treatment. In all honesty, my acne was not that bad. It wasn’t cystic or extremely painful, the worst part was the scarring. But my results with Differin gel have been so great, I wonder if I would have had the same results even without the Accutane. But we’ll never know.
I write this as a cautionary tale. If you are unsure about whether you should start an Accutane treatment, my advice (as a non-medical professional, based on my anecdotal experience only) would be to at least consider other options first. I don’t think Accutane treatment is for everybody and at this point, I don’t think it was for me.
If you do decide to start Accutane treatment, here are some products that helped manage my side affects.
