The following is a conversation between Derek Jones and Pete @ Propeciahelp.com. Derek is a British documentary film-maker. We spoke in February of 2019. Derek’s son, Jesse, tragically took his own life in 2011. Jesse took two courses of Roaccutane and talked about libido loss in a note on his computer.
Derek: I’ll start by reading the email from Jesse. It was unsent on his computer, written to us.
“My depressed state at the moment is nothing like i’ve experienced before. Roaccutane seems to have changed the way my mind and body works in a big way. I can barely bring myself to type its name because I hate it so much. I used to think I knew what depression is but now I realise I never really knew depression – only anxiety caused by thought processes that I could put my finger on. This was a synthetic depression. I had it after taking Roaccutane and because I didn’t know what caused my decreased sexual interest, I was upset and confused.”
We realised how badly he was affected after his death. We did not know quite how depressed he was. We did not know.
Only a small number of the people that take it seem to get the very bad side effects. Some people think it is because of genetics. It seems some people are more genetically susceptible. Jesse took a first course in 2005 then took it again in 2009. The first course was ok but the second, really badly affected him.
P: People often have something they call a crash – experienced by Accutane, Propecia and SSRI people. There’s this crash that happens, when all hell breaks loose. You have a very extreme reaction to the drug.
DJ: Some people who are very badly affected by a short course. There are quite a few. I included one young man in my film – John Medland – a medical student. He was a young medical student. He only a few spots on his back. Hardly anything. He took Roaccutane for a short time, became very depressed, then he was literally only a couple of months away from qualifying as a doctor at Manchester University. He had really only a very short course of Roaccutane. Then he took his own life. He had this crash very, very quickly.
DJ: Jesse didn’t take his own life until February 2011. He’d had two years of suffering. Less than two years before he took his own life. It does affect some people more rapdily than others, I think.
P: There are some very similar cases to John Medland. There are people who’ve taken very short courses, with all hell breaking loose very quickly. There are people who’ve had this with Propecia and SSRIs also.
DJ: It affects females and males, too. I spoke to young woman who contacted me after my film. She suffered very severe side effects including loss of libido. It badly affects women as well as men. I want people to understand that it’s not just a male problem. Girls who are thinking of taking it need to know about these very severe side effects too.
P: We need everyone to know about the side effects.
DJ: There was also the tragic case of Melissa Martin-Hughes. She lived in Chelthenham and had just done her A-levels. She had taken Roaccutane and became extremely depressed. The police found her on the cliffs in Dover. Fortunately the police found her there and took her back home. But a few days later she took her own life. Days before her excellent A-Level results were due. It affects girls as well. We need to get that across. So it doesn’t become a male-only erectile dysfunction discussion.
P: It’s an everybody thing. We are seeing more and more young women coming forward on the propeciahelp.com message boards. More and more people, broadly. Many seem to have been affected by SSRIs.
DJ: I was depressed to learn that since 2011 there have been thirty five plus reported deaths after taking Roaccutane. After my film went out, from 2012- 2014 there were twenty more suicides.
There needs to be more research into this drug. The yellow card system is not used. When Jesse died I stormed into his GP and had to force them to fill out a yellow card. Jesse had gone to his GP and told them about his side effects. Did they do anything? No. Did they submit a Yellow Card? No.
P: It’s something you see with all these medications, Accutane, Propecia, SSRIs. The medical profession does not have the knowledge or awareness. This is part of what we’re trying to solve. It should be handled by government agencies rather than individuals, though.
DJ: Dermatologists need to be educated about this drug. They are starting to believe now that it can cause sexual dysfunction. I know the patient information leaflet now contains the sexual dysfunction side effect. But it doesn’t yet say that side effects can be permanent or long lasting. People have trouble coming forward, because young men in particular don’t want to come in forward.
P: It is not easy to admit to yourself that what has happened, has happened. I recognised this myself. You almost want to believe the medical professionals that it is all in your head. If it is all in your head – that can be solved. But if it is a lasting physiological problem, that is harder to solve.
DJ: I have spoken with young men who talk openly about the sexual side effects. But the dermatologists are not giving the information. They do not seem to give adequate warnings to people. They need to tell people that it can cause the effects listed in the patient information leaflet. It can cause suicidal thoughts. It can cause erectile dysfunction. They should be giving spoken warnings.
P: I think part of this is that it would be so damaging to admit this stuff. They’ve been prescribing it for years. Dermatologists have been prescribing it for decades, so it is bad for them, as a profession. They are so far into this now. The more they try to bury the problem, the easier it is for them to deal with. If they suddenly roll back, there is a problem. If they admit that there is a problem, it looks very bad. The incentives they currently have are to deny the problem.
P: I can see possibly a large public health scandal emerging from all of this. You have Propecia, Accutane and SSRIs in the mix. These are prescribed in vast quantities, all the time. Then the side effects start to emerge. You actually have quite a big public health scandal there. No one knows how to handle that. You probably quite soon have a whole bunch of people who make the link between their strange sudden libido loss and the drug they took. You could suddenly have large numbers of suicidal people. You have a big public health crisis. It would be a real mess.
DJ: These drugs could have a lot more casualties.
P: These drugs are widely prescribed. Whilst it’s a small number who get badly burned, but when people start making the connection, you suddenly have a lot more.
DJ: This is world-wide. I have spoken to people in Australia, America, New Zealand, France. It’s not just us and North America. There are people being affected by this everywhere.
P: It is now a global issue. There are people around the world who are having incredibly bad, lasting side effects.
DJ: I am meeting with Jackie Doyle Price in the near future. She is the Minister for Suicide Prevention. My MP has helped me push for it. But the meeting might be moved.
P: They may have a schedule problem at the moment due to everything else happening with Europe. We really need is a large-scale health-study.
DJ: Another thing is that there is a lot of advertising out there for these medications, and a lot of people see it on YouTube. People see this stuff and they believe it.
P: Everyone’s head gets filled with this junk. People who see it don’t know that if you roll the dice and lose, you are stuck with it.
DJ: Do you think it is permanent?
P: No, I think that if you can understand how the medication gives the side effects, you have can then see think of how to treat it. If you can find something that treats people affected by Propecia, that then can be tried on Accutane and SSRI people. Propeciahelp.com is an all encompassing thing. The site is for Accutane and SSRI users too. This is the place everyone is going to.
DJ: The information needs to get out there on suicide, anxiety. I’m sure maybe the sexual side effects affect more people than the extremes of depression and suicide. We never would have imagined Jesse would have taken his own life. Growing up, he wasn’t that sort of person. He was enjoying his life and had ambitions.
I’m going to see Jackie Doyle Price and looking at Roaccutane is one way she can prevent some suicides. The government needs to be involved. They need to know it is a serious problem and there needs to be greater restriction from use, or withdrawn.
P: The government has significant power in this situation. The regulators, especially, are important.
DJ: I want to do a follow up to my first documentary. I am hopeful to get a commission for the follow up. It am hopeful to focus more on the sexual side effects. I would like to make it more extensive on the sexual side effects.
P: There are a lot of people who would appreciate that.