u/Independent-Elk-5250

i’ve been waiting until i near the end of my treatment to post my experience with accutane. i hope it can help others, and possibly help me find someone who had a similar experience.
i want to preface by saying my experiences on accutane seem to be far more severe than what the normal person will experience. i hope i dont scare anyone away from the medication, i do think its a necessary decision for many people, including myself. ill start with a timeline to break down my experience throughout each month of treatment.
when starting accutane, i HIGHLY recommend starting a supplement routine one month prior to beginning treatment to allow your body time to adjust and prepare for the medication. my daily supplement routine consisted of:
fish oil
milk thistle (for liver)
zyrtec 10 mg antihistamine (over the counter, this is safe to take throughout your entire treatment to help prevent purging - and it worked to prevent mine!)
omega 3
vitamin d

september 2025 - 40 mg (110 pounds)
i started accutane at 40 mg. this month brought very few side effects. i noticed my skin became quite itchy for the first week
by the second week my scalp began to itch and tingle as well.
(my dermatologist unfortunately did not warn me of the possibility of hair loss, and this was the first sign for me. i have gone through telogen effluvium in the past as a result of long term doxycycline treatment for my cystic acne. that round of TE lasted 1.5 years. one year of consistent hair loss and 5 months of slow shedding until it stopped.)

october 2025 - 60 mg
HOLY CHAPPED LIPS. because i was tolerating the medication well so far, my derm increased my dose by 20 mg.
this was when i started to notice slight aches and pains, specifically in my lower back and my achilles heel. i believe my joint and body pain was less severe because of the daily supplements (i HIGHLY recommend them!)
my skin started to become visibly dry, with the occasional nose bleed 1-2 times a week. quite heavy at first but they began to level out.

november 2025 - 80 mg
my derm took an aggressive approach as i was not experiencing a purge thanks to zyrtec. unfortunately, this was when an underlying autoimmune disorder (?) presented itself. i do believe accutane was the trigger for this, especially such a high dose for my weight. most doctors would not prescribe this dose for me, and i wish i never hit this dose.
at this point my skin was VERY flaky. i stepped away from foundation and most makeup because the texture was difficult to hide, and my skin was starting to clear up nicely so i felt it wasn’t as necessary anymore.
my derm advised me it was safe to drink occasionally (i know this is controversial) and i had no issues with 2-3 drinks in one sitting, once or twice a month. this was fine for some time, however, i started to notice i’d become VERY sick the next day. not the typical hangover or stomach issues, but a low grade, sometimes high fever, swollen lymph nodes and ankles, and i could barely leave my bed due to the body pain, weakness, swelling. this would last anywhere from 2 days to a week. my bloodwork was still coming back normal and i decided to cut out drink completely.

december 2025 - 80 mg
this was by far my worst month on accutane, and i strongly debated stopping treatment. what started as a regular cold that was passed amongst my friends resulted in 5 hospital visits over the course of 2 weeks. i was diagnosed with strep throat and treated with antibiotics, but my symptoms were too severe to simply be strep throat. i had 3 CT scans and every test they could provide me in the ER. because i have a family history of lupus, i started to wonder if this was a strong possibility for me, and i eventually sought out a diagnosis for POTS. i finished treatment for strep throat with no improvement and a round of steroids with no improvement.
i ran a 100-101 fever for 35 days which has caused lasting damage to my mind and body. i cant fully explain just how sick i was because i don’t remember much of this month, but it was the most terrifying experience of my life. my last visit to the hospital was because my eyelids began to swell shut and leak fluid, as well as fluid buildup in my neck. i took a 2 week break from accutane because i was worried my body was beginning to fail and i wanted to cut out anything causing more strain. most nights i wasn’t sure if i would wake up the next morning. i was experiencing hallucinations from the long term fever, i lost 15 pounds in total and took a 3 week sick leave from my job. this was when the scalp pain and tingling returned and my hair started falling out slowly - a combination of accutane and my health issues triggering the start of another round of TE.

january 2026 - 80 mg
this was another difficult month for me. i would have one week of recovery, and then my fever and body stiffness, pain, and swelling would return for another week. this happened off and on throughout the month and i had a hard time identifying what could be triggering the flare ups. i was still unaware if i had POTS at this time. my hair began falling out in larger clumps, but still considered to be moderate shedding. i switched to nizoral shampoo to deal with the scalp pain/itching and dandruff.

february - 60 mg
this month was when my dermatologist and i agreed i should behind tapering down to a lower dose to help my body recover, as the fever flare ups were still happening regularly and my hair loss peaked. the clumps coming out were pretty traumatizing. she suggested stopping treatment entirely, but my skin was almost completely clear, and i refused. i didn’t have the heart to jeopardize my progress and the likelihood of my acne returning. im sure everyone can agree, starting accutane is a very difficult decision to come to, and i wanted to stick it out. i couldn’t bear the thought of struggling for all those months just for my skin to return to its original state.

march - 60 mg
this month was pretty much the same as february. hair loss was still at its peak, occasional fever flare ups and the joint pain was starting to worsen. i noticed my mental health started to suffer, but i honestly don’t blame accutane for this. i think it was a result of the constant health issues.
my blood work was a bit different this month, with some signs of potential liver damage. my derm felt comfortable continuing my treatment with diet changes.

april - 40 mg
things started to get better for me here. my joint pain was easing up, the fevers and flare ups were less frequent as we lowered my dose. i only experienced a flare up the week leading up to my period. my skin still remained flawless. my derm agreed with me when i suggested extending my treatment at a lower dose because i was very close to reaching my cumulative dose.

may - 30 mg
still perfect skin! joint pain continues to get better, my mental health has started to improve as well. my hair loss started to fluctuate, some days were very heavy and others would only bring a very small shed. i continued to deal with this ONLY using nizoral shampoo, as i knew it was going to be temporary like most cases of TE. as of today, may 15, my hair loss is nearing the end (i think, hope, and pray lmao)

my treatment will continue until august, next month we will taper down to 20 mg and stay there until i finally come off of accutane completely.
im unsure if accutane was what triggered POTS for me, or if there’s another underlying condition i have yet to get a diagnosis for. some days are worse than others, but i seem to have a better handle on things lately. im still working to find the right doctor to find what’s really wrong with me. i know lots of people have POTS and have a better experience on accutane than i did. my case may be one in a couple thousand, but i wish i knew what the future would hold before i started treatment. i cant say for sure if i would have gone through with it, but life is amazing with clear skin for the first time in my life. i hope my hair loss continues to stop and stays stable once my body adjusts to coming off the medication. although having clear skin changed my life for the better, it has been the hardest 10 months of my life physically.
i’d love to hear if anyone had a similar experience to me… i’ve had a hard time finding other stories like mine.