Isotretinoin; Sharing a Story and Took the Survey

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?
USA

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
Google search and reddit

What is your current age, height, weight?
27, 5’9", 165 lbs

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Isotretinoin (Claravis)

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
40mg twice daily
I took 3 pills total; so 160mg

What condition was being treated with the drug?
Acne

For how long did you take the drug (weeks/months/years)?
2 to 4 days

How old were you, and WHEN (date) did you start the drug?
25
Approximately started on December 11, 2018

How old were you when you quit, and WHEN (date) did you quit?
25
Approximately ended on December 14, 2018

How did you quit (cold turkey or taper off)?
Cold turkey

How long into your usage did you notice the onset of side effects?
After second dose

What side effects did you experience that have yet to resolve since discontinuation?
Anxiety, panick attacks

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[*] Loss of Libido / Sex Drive
[*] Erectile Dysfunction
[ ] Complete Impotence
[*] Loss of Morning Erections
[*] Loss of Spontaneous Erections
[*] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[*] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[*] Lack of Motivation / Feeling Passive / Complacency
[*] Extreme Anxiety / Panic Attacks
[*] Severe Depression / Melancholy
[*] Suicidal Thoughts

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[*] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[*] Lowered body temperature

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Mostly outdoor cardio (because of Covid-19 gym closures). I have tried pine pollen, which seemed to have some positive effect for the first few times taking it, but nothing significant.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?
Post-drug testosterone levels, Basic metabolic panel, Thyroid stimulant hormone, CBC with auto diff. These cam back in normal ranges. Bilirubin was slightly high at one point, but was normal at a follow up test.

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

After the first 40 mg dose, I noticed the expected dry eyes and skin; however, about 30 min after taking the second 40mg dose while eating dinner, I had a very strong reaction, i.e., I nearly fainted, was incredibly shaky, light headed, heart rate was very high, decreased vision. I considered going to the ER, but the symptoms subsided to manageable levels after about 45 minutes. I was dizzy and rather panicky for a few days afterward and occasionally had to pull over on my commute to work as I thought I was going to faint.

At some point I stupidly took a 3rd pill to see if a similar reaction would occur and, again while eating dinner, it did. Since I wasn’t sure whether I would need medical assistance, I ended up staying the night at my parents’ house and felt extremely emotional and was in tears lying in bed.

After a couple weeks of trying to let my body get back to normal, and I did feel normal, I went to the gym to lift weights. All of the same symptoms came back after returning home and starting to eat dinner for the night. I’m guessing some of the drug had been stored in fat and was released during exercise. I decided to go to an instacare clinic that night where I had some blood work done. Everything came back normal, though the doctor told me my blood-oxygen level was high.

Again, I was dizzy and panicky for about a week after. I refrained from exercise as well. I returned to feeling normal again, but on at least 3 occasions the same but less severe syptoms returned while eating. It seems like those instances correlated with eating fatty meals.

I wasn’t in a sexual relationship during the short course of the drug, but I had normal sex 1 week before taking it, and started a relationship about 2 months after taking it. There was a noticeable difference in desire, mental-sexual connection, maintaining an erection. Aside from anhedonia, depression, and sexual side effects, I felt otherwise normal for 8 months after taking it.

I feel like some side effects have gotten worse after that 8 month mark; currently, I have the same, but possibly hightened, deppression, anhedonia, sexual side effects mentioned above in addition to low-level dizziness, hightened anxiety, cold glans of penis and testicles, crying is a more common response to negative feelings, panic/anxiety from environmental stimuli, i.e., can’t stay in coffee shops too long before feeling light headed. Interestingly, these symptoms, aside from sexual ones, are attenuated when I’m with another person which leads me to beleive anxiety has a big effect.

I want to express gratitude to those that host this site; I think they, and the people who participate, have created a great community and I’m curious/hopefull to see where research goes and to hear from others that may have had a similar experience to mine.

4 Likes

Do you still have dry skin.

I’m very sorry that this condition hit you. Unfortunately it is the same for many users here. I know users who had an extreme reaction off one or two pills only. Sadly in one extreme event, an American male killed his dermatologist subsequent to extreme sexual side effects from a small number of pills. This is the level of problem it is creating. Unfortunately isotretinoin can cause lasting sexual dysfunction in some users, male and female.

This is a slow-motion public health disaster happening in real time. You are sadly now caught up in it. Remember that this was not your fault.

Be extremely careful of any intake of zinc, milk thistle, additional vitamin A supplementation, tribulus terrestis, SSRIs, finasteride, multi-vitamins, St John’s wort, any exogenous substances need to be scrutinised with extreme depth and you need to carefully log down what you are doing in written format.

We are keen for more Accutane, Roaccutane, isotretinoin users to join our site. Please send them here.

1 Like

I don’t experience dry skin anymore. My skin went back to its normal oily state a couple days after taking the last pill.

Here are some more recently active channels I’ve found on Youtube. I don’t know if anyone here has a connection to them, but it would be a good idea to ask if they would be able to include a link to this site in their video descriptions to get more accutane users here.

(Various Drugs)

(Accutane Specific)

pete, i’ve seen you comment about how zinc intake could be increasingly dangerous to users of isotretinoin but i’ve also seen people argue that isotretinoin users have zinc deficiency and it’s necessary to consume zinc after the cessation of treatment. what is your reasoning behind avoiding zinc consumption ?

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Zinc is a 5-AR inhibitor. You have been burned by taking a 5-AR inhibitor: Accutane. Is it smart to add more fuel onto a fire which is destroying you?

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Anyone stating that someone has a zinc defficiency needs to support this with labs and publicly issue the lab results. Anyone who “argues iso users have zinc deficiency” needs evidence, not bullshit assertions.

There is a quote that I like: “In God we trust. Everyone else needs to bring data.”

Where is your data?

1 Like