Diane and Diana: Carly’s Story
Carly’s story:
I was referred to a psychiatrist for adult ADD when I started my first year at university. I made a passing complaint to my aunt, who is also a GP, over the summer about some occasional acne around my period. She suggested that I try Diane-35. I was also taking dexedrine at the time, but had not had any problems with it.
I was just fed more medication
By the time school started I was an emotional wreck. I was experiencing severe mood swings, depression, anxiety, insatiable appetite, I began gaining weight at an unprecedented rate (in spite of being on amphetamines). My focus, concentration and self-esteem all took a nose dive, and I frequently thought of suicide. I tried exercising harder, as I had been in good shape and athletic before the nightmare began but I just seemed to get weaker and weaker. I just assumed that I wasn’t capable of accomplishing anything and that I was doomed to be a failure. So what was the point in living anyways? My mood never really improved, but eventually I just became apathetic and accepted my unhappiness. My psychiatrist didn’t think to consider Diane-35 as the cause of my symptoms, so his answer was just to feed me more medication until we found something that worked. He admittedly doesn’t know much about hormonal contraceptives.
It wasn’t until a year and a half later, when I stopped taking Diane that things began to improve. I was still anxious, but slowly I started to get better. I started running again and was amazed at the rate of improvement that I was seeing. I was easily adding a mile every week. It was so totally unlike anything I had experienced before. I assume that this was because my testosterone and DHT levels were no longer being suppressed to the point of non-existence. I stopped menstruating entirely, eventually I noticed a thick layer of oil on my skin, and the development of cysts all over my face. Soon the hair on my head was falling out in clumps. I’d look at my pillow in the morning and it would be covered in long hairs. Then my cheeks began to erupt in pustules. This had never happened before in my life. Before I knew it I was also growing facial hair. I had gone from a healthy, happy, fit and energetic young woman to become… something else entirely.
where have all the good doctors gone?
I am now taking two anti-depressants, as well as adderal and yasmin. Now I’m stuck wondering if I would have really needed any of it in the first place if the cause of all my problems had been correctly addressed from the beginning.
I have lost faith in our doctors. You can’t contradict or correct them if they are missing information. It pisses them off. I mentioned to my family doctor that Diane-35 isn’t legally meant to be prescribed as a means of birth control. He says he prescribes it to young women all the time and that they often complain about the symptoms that I experienced after going off it. You’d think that would be a hint that it is a medication works only in the short term, but with severe repercussions afterwards that maybe its a bad idea.
The whole system sickens me, where have all the good doctors gone?
Reponse from Diana – the huntress – aka Millie Kieve who runs April
I began campaigning to get more truthful information about this drug following my daughter Karen’s experience of depression, weeping and other problems while she was taking Dianette.
I put up a Dianette page on April (Adverse Psychiatric Reactions Information Link) www.april.org.uk. The emails started rolling in. I have received over 150 reports of depression and other serious psychological reactions that women believe is caused by the drug known as: Dianette or Diane-35 which contains ethinyl-estradiol and cyproterone acetate (anti androgen). It is also known as Co-cyprindiol, Acnocin, Cicafem, Clairette and Diva.
I was shocked at the serious problems and devastation to their lives the women believed was due to taking this drug. I was also concerned that many did not know it was not licensed as a contraceptive and only recommended for short term use for hormonal problems, such as acne or hirsutism (excess hair) conditions.
depression IS a known side effect of Dianette
Women who wrote to me, said ‘the cloud lifted, when I stopped the drug’, or ‘When I stopped I felt back to my old self’ so it seems the drug was the likely cause of their depression, self-harming and in some cases even suicide attempts. Karen’s psychiatrist later told me, “It is well known in the profession that Dianette causes depression.”
Weight gain was the only adverse reaction my daughter was warned about – this can lead to eating problems in girls worried about the weight gain. But I have had lots of reports as here from women of hair falling out.
Barbara Mintzes studied why it had been licensed originally and the direct to consumer advertising that included the misleading phrase used in marketing ‘The Pill that gives you beautiful skin’. This was featured by the Canadian Broadcasting Company some years ago.
I campaigned to persuade the Medicines Healthcare Products Regulatory Agency (MHRA) to send out warnings to doctors, once I realized how overprescribed the drug is without doctors informing some women it is not licensed as a contraceptive, due to risk of deep vein thrombosis (DVT). Few doctors seemed to realize depression may be an actual side effect. My concerns were so many women telling me they were prescribed antidepressants without being told to come off Dianette.
Some were on the drug for 6 or 10 years, when it is only recommended for a short term treatment. No warning about the high risk of thrombosis had been issued by the MHRA since 2002. I have had many reports of women who have died from DVTs while taking Dianette. One young woman told me she had a stroke at 29 years of age, and now suffers seizures due to the brain damage she suffered as a result.
depression under the ‘Mild Reactions’ heading is inappropriate
I complained repeatedly to the MHRA that putting ‘depression and loss of interest in sex’ on the patient information leaflet (PIL) under the heading Mild Reactions was inappropriate. They eventually informed me they would review the safety of the drug after I had nagged the director in person and by mail for at least 10 years!
I was asked to send in the emails I had received together with data from the manufacturers. I was also asked to urge the women to report the suspected ADRs to the MHRA using the patient reporting Yellow Card System – a system campaigned for by several people, including me who were concerned at low numbers of adverse drug reaction (ADR) reports from doctors or coroners.
I was not informed of membership of the expert committee who would review the data for Dianette. The MHRA in their press release in May 2006 about the review of Dianette finally stated “Depression is a known side effect of Dianette”. This press release appeared on the MHRA web site – after an article had appeared in The Guardian “Pill under review over link to depression”
After the MHRA’s ‘expert’ panel review, there was no press release or posting of results of the inquiry on their web site but I was told additional warnings were recommended to be added to the leaflets about depression. I was not informed of what the warnings were and searches on the MHRA web site do not come up with any results of the review or warnings.
Bayer which makes Diane now includes on their Summary of Product Characteristics – SPC:
depression and mood changes is a common (1/100) side effect noted in clinical trials.
Since the MHRA review they have added the following to the patient information leaflet (PIL)
4. POSSIBLE SIDE EFFECTS
Like all medicines, Dianette can cause side effects, although not everybody gets them. Tell your doctor or pharmacist if you are worried about any side effects which you think may be due to Dianette.
4.1 Serious side effects – see a doctor straight away
Severe depression: Although, it is not considered a direct side effect of Dianette, you should stop Dianette as a precaution, if you develop severe depression, and see your doctor straight away.
I wonder how they can justify the statement that depression is not considered a direct side effect of Dianette – when on the SPC they state depression and mood changes is among common side effects and even the MHRA in their press release in 2006 about the review of Dianette stated “Depression is a known side effect of Dianette”. With colleagues I put together a poster on this issue.
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Make your voice heard!
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What an ordeal! I’m beginning to wonder if some 19-year-old stoner boy on a skateboard might be a safer source of drugs than the average doctor these days. He probably knows more about side effects.
Carly, I so hope you are on the road to a somewhat-normal life. You probably know this already, but it’s a good idea to keep an eye on Yasmin, a/k/a Yaz. This is the Bayer hormone product sold here in the US, and billed as birth control that also combats acne and “pre-menstrual dysphoric disorder.” (By some miracle they never got Dianette approved on the US market.) It contains drospirenone, a progesterone relative, instead of the anti-androgen that’s in Dianette, so it should not be as hazardous – but it is on the FDA’s Top Ten most-complained-about drug list, both currently and since 2004. The most serious issue is the small but real risk of blood clots leading to heart attack or stroke – which is true of all birth control pills but appears to be worse for Yaz than the older ones. It also has been reported as causing depression in some takers. I doubt there is any synthetic hormone product that is totally innocent on that score.
Finally, Tina Fey has a little something to say … if you can deal with any humor around this question at all, please have a look at this Saturday Night Live spoof-advertisement for “Annuale,” the birth control pill that lets you cut your periods down to once a year! I didn’t really appreciate the satire till I read your story:
http://www.nbc.com/saturday-night-live/video/annuale/221774/
I will definitely be submitting my own report as well. I’ve taken Diane-35 on and off for many years for my acne and my mild hirsutism. It has also helped greatly with diminishing the occurrence of the benign lumps in my breast and has made my periods much more manageable. But with every benefit there is a drawback. Little to no sex drive. I developed that infamous lump in the tail of Spence. Depression like nobody’s business. Fatigue to where you’re often tired even after a good 8 hour sleep. Loss of interest in even mundane things like bathing, which led to a very mild weight gain for me because you try to combat that lethargy and depression with comfort foods–not knowing what else to do. I’m six months into my latest Diane-35 stint and I’m feeling all of the negative above.
My friend was on Dianette for 5 years before she recently realized that it could have adverse effects. She had heard it had been banned in France and began researching the drug online and through this RxISK website. She became concerned and went to her doctor. This is what she said:
“When I told the doctor of my concerns, that Dianette could cause blood clots and had been banned in France, she laughed in my face and said ‘but this is our best selling product’. She was not listening and just wanted to rush me out. She treated me like a nuisance/ a bold schoolgirl and made me feel like an idiot.”
My friend left with a prescription for Yasmin/Yaz which (upon more RxISK researching) seems to be just as dangerous. Irish doctors seem totally clueless and blind to any prescription drug-induced harm. My friend is now looking for a new doctor.