My acne started when I was 12-13 and within a few years it was up and down my torso and on my face. For many years I tried topical cremes and antibiotics, but after bleaching much of my wardrobe with bensoil peroxide, and being disappointed with many other ineffective treatments, I decided to go on Accutane. Mind you, this was after many years of increasingly bad cystic acne that had decimated my self esteem and caused a once energetic and talkative boy to turn into a depressed and reticent young man.
When I got the medication I cried tears of joy thinking that the answer to all my ills had arrived. Being the excellent student that I am, I had done research on the drug and heard of amazing transformations and hardly a whisper about the downsides, except that there were "side effects."
"Side effects?" I thought. "Who cares about side effects when we are talking about the complete remission of a disease that has ruined my life for all of these years? I can deal with dry eyes and skin for a few months." So I took the drug for a 6 month course. My initial dosage was 40mg, moving up to 80mg, then culminating with 120mg. That dosage should have been my first red flag.
During the course of the medication I suffered from some fatigue, depression, stomach pain, and dryness. Mostly I just ignored the side effects because I knew they would clear after I quit the medication. Accutane cleared my acne at least 90%, and I was happy to have finally found a cure, and after I quit the medication my side effects went away.
Although I did notice that I seemed to be a bit more "focused" on my studies, or should I say "obsessed with getting perfect grades to the exclusion of anything else." Incidentally, that got me a scholarship to a world renowned university.
It was two years later that the real problems began. My acne had returned, in part, and my dermatologist suggested that I go on a round of antibiotics (doxycycline). He also prescribed some Retin-A topical. Midway through the treatment I started experiencing a pain under my tongue and dryness in my mouth, so I went back to the dermatologist and he recommended that I quit the antibiotics because I was likely experiencing an allergic reaction. I immediately quit the medication, but the dryness in my mouth spread to my eyes and nasal passages. Then I started feeling anxious and depressed, and I started to experience gastrointestinal issues.
It was eerily reminiscent of the symptoms that I had experienced when on Accutane, but I dismissed the connection. After all, the half life of the drug is generally between 10-20 hours, how could I still be experiencing side effects after all these years?
I was sent to a gastroenterologist, rheumatologist, neurologist, and even a psychiatrist, but all of them could find nothing of clinical importance, save for the fact that I seemed to be suffering from a mild depression related to my growing number of health problems.
After conducting a bevy of gastroenterological tests, at my insistence a doctor performed a gastric emptying study and found that I was afflicted with Idiopathic Gastroparesis, which means that my stomach does not empty correctly and I suffer with nausea, bloating, headaches, and fatigue after eating.
That was 3 years ago, and to this day no doctor has been able to find anything else wrong with me, on paper, despite the fact that my symptoms, as I call them, continue to increase in number and severity. Here are my symptoms:
-Dryness in mucous membranes (nose, eyes, mouth).
-Fatigue, for most of the day, only relenting at night.
-Muscle weakness, muscle pain, twitching throughout the body.
-Gastrointestinal problems: gastroparesis, nausea, bloating, frequent diarrhea.
-Neurological problems: near constant headache, ringing in ears, numbness in extremities.
-Bad memory, trouble concentrating
-Depression, anxiety, and suicidal ideation.
Of course, I cannot definitively say that my current problems were caused by Accutane, only that many of them are similar to the symptoms that I experienced while on the drug and that they began after I took the drug. This connection is obscured by the fact that the mechanism of action of the drug is unknown, and the company that developed the drug (Roche) has had no legal incentive to explore or disclose the mechanism of action. What I can say is that after researching this drug and reading an exhaustive number of horror stories, my symptoms and experience sound remarkably similar to a lot of others. Also, theres now ample scientific evidence that this drug is known to cause long term side effects through modification of gene expression.
At this point I feel that my many symptoms have effectively ruined my life, and Im currently struggling to find treatment so that I can continue in my career and live a fulfilling life.
To those that are anxious to cure their acne with Accutane: It my permanently clear you of acne with no side effects, or the acne may come back in a number of years like it does for many people, but I implore you to TRY EVERY ALTERNATIVE before considering this dangerous and destructive drug. You want clear skin, but you may be making a deal with the devil.
Your dose was very high- but hindsight is 20/20. So hard to say what could have caused the issues, but accutane does have side effects and for some small % they do not go away.
I was on it for 7 months, never got to a full dose because of all of the side effects during, never got over the IB so I never got clear. I had to find my solution the hard way- and it is hard because dermotologists will not really help you past the topicals and antibiotics.
So I do understand why people are desparate enough to try it, the promise of clear skin (which does happen for most) is a very alluring promise. And most people do sail through and clear up for a few years. That is a very powerful draw...
Thankfully my side effects subsided when I got off it, longer term one never knows.
Try to stay positive, work on the stomach problem that has been diagnosed and eat healthy, get out and exercise and get treatment for your depression...I do like having an action plan when I'm surrounded by chaos.
Thanks for sharing your story, it is important for people to consider all aspects before jumping in.
Yes my dose was very high, but I trusted the doctor that the dose was within clinical parameters. He's probably still dishing out the same dosage, even after I talked to him about my problems.
I do try to stay positive, but lately I have been in a VERY bad state after losing my job and girlfriend due to my symptoms. I'm very reluctant to treat my depression through pharmacological means, for obvious reasons, but I am seeing a therapist.