← Back to all stories

Isotretinoin eye damage

Age: 36–45  ·  Duration of use: 1–2 years  ·  Current status: No, have stopped
Symptoms: Sexual dysfunction, Cognitive impairment, Suicidal ideation, Severe anxiety/panic, Muscle/joint pain, Severe dry eyes, Decrease of AMH fertility hormone, Joint damage, Early onset osteopenia

I have had moderate acne on my face and back since I was approximately 12 years old.

When I was 26 years old, I was referred to a dermatologist from the Spanish health public system. She advised the best course of action to clear my acne was taking isotretinoin, and explained to me that I would need to do regular blood tests and be on contraceptive pills during the whole treatment. She gave me no other option but that alone scared me enough to turn down her offer. I decided I would keep trying creams and lotions and improving my dietary habits as much as possible and hope acne would clear on its own with time.

Sadly, it didn't clear on its own. So, when I got to 30, I really wanted to get rid of acne and thought I had tried everything the natural way. That's when I decided to look for a private dermatologist in Alicante, my hometown in Spain. Little did I know that this decision would cost me my health in the long run.

I was only advised that I would need to take contraceptive pills and do regular blood tests to assess my clinical tolerance to the treatment and liver function, that my skin would become drier and more light-sensitive during the treatment, and that I would need to use sunscreen to prevent sunspots. That was all.

The private dermatologist prescribed me my first round of isotretinoin in December 2019: an initial dose of 20mg to be taken twice a week at first, then once a day during 6 months. In July 2020 he increased the dose to 40mg a day during the final 4 months. As soon as the dose went up to 40mg per day, the acne became stronger than ever. Then, it slowly cleared towards the end of the treatment.

I reached a total dose of 6000mg of isotretinoin. Once the treatment was over, I was prescribed a 0.5% concentrated retinol cream that I would need to continue using for life to prevent the acne from coming back. After a few months I stopped the retinol cream and replaced it with a niacinamide serum and a light hydration cream.

But then, in 2021 I got 2 COVID vaccines. After that my periods became stronger and I gradually returned to having the same moderate acne that I had prior to taking isotretinoin. I tried again the retinol cream which I had been previously prescribed by the dermatologist but it was not enough.

So, in 2022 I went to another dermatologist from the public health system and told her I had taken isotretinoin 2 years ago but my acne had come back after receiving the COVID vaccines. She directly prescribed a 2nd round of low dose isotretinoin, 20mg/day. After 5 months on it my acne had completely cleared up but she insisted that I needed to complete the treatment or the acne would come back. I naively trusted her and took it for 5 more months, reaching a total new dose of 6000mg of isotretinoin.

My current symptoms include severe dry eye with limited use of screens, and inability to work in an office setting due to air conditioning. Joint and back pain with diagnosed generalized cervical disc desiccation, predominantly involving the first four discs, and patellar chondromalacia grade II due to a significant loss of cartilage on both knees. Advanced osteopenia equivalent to a menopausal woman. Diagnosed with a markedly diminished ovarian reserve compared to normal parameters for my age group: AMH of 0.65. Generalized dryness in all mucus membranes: mouth, nose, vagina. My period has shortened to 2 days instead of 5. I've talked to other women who've taken isotretinoin and they've told me similar stories. Digestive issues (including diagnosed acid reflux) and intestinal dysbiosis. Dry and thinning hair. Still lots of acne because the root cause was never addressed.

Has a prescribed medication affected your life?

Share Your Story