Dianette (Diane 35) is a pill for birth control that contains something that suppresses the androgens in your body. If you decide to stop taking it, you risk the androgens rising to such a high amount that it can cause your hair to shed again (if that was the reason for going on it) or acne to flare up again (if acne was the reason for going on it.
I was put on Dianette to control my hair loss (along with other meds) but now, for a few reasons, I want to stop taking it but I fear for my hair and as there is no lower dosage of this pill, I am documenting my trial of cutting the pills up into quarters and taking less each day to see if I can prevent my hair loss from happening again.
I am 31 years old and at the age of 21 my hair began to get thinner. By 26 I was wearing wigs all the time because the top of my head showed too much scalp.
I began taking Dianette in 2006 while my dermatologist investigated why this was happening. Later all tests came back normal and in October 2007 I was put on Rogaine 5% liquid twice a day after being diagnosed with Androgenetic Alopecia and Telogen Effluvium. Nine months later there was a clear improvement and in January 2009 I stopped wearing wigs as I felt I had regrown enough hair to feel semi confident.
Since then my hair has thickened up even more and is currently looking the best its looked in years but now I want to stop taking Dianette for reasons I will explain in the blog. Its quite a scary thing for me to be doing because, like all women, hair forms a major part of our confidence and I cant bear the thought of losing what I have regrown.
From what I have read, stopping Dianette can do harm for whatever reason you were put on it for in the first place. So I have looked into ways of weaning myself off it without hurting my hair too much rather than suddenly stopping. The thing is that although there is a fair bit out there about quitting Diantte, or BCPs in general, I’ve not found one person who has documented how they got on when weaning off it.
So that is my reason for doing this. It may be a huge disaster or it might work really well. At this stage I dont know but I wanted to blog my experience to help others who also want to wean themselves off Dianette or any other BCP.
***As this part of my blog is getting a lot of traffic, I will also add this. The story of my journey is documented in my blog and I would love you to read the whole thing before asking questions as you might find the answer there. I stopped weaning around 10 months ago and I have written about how my shedding and periods affected me. I am also still updating the blog because my periods are still irregular. There are also lots of comments that you can read, particularly the comments on this page. Please feel free to continue to take part in the discussions with several women on this subject :)(24.10.12)***
June 2nd, 2011
24 Comments
Quitting Dianette 
Hi
Did you have any success with weaning the pill after all? Would love to hear any progress you had? I was exactly the same as you- was on Dianette for 8 years to block androgen related hair loss, but for many reasons i had to come off it. I wanted to wean it as i knew stopping it cold turkey would kill my hair through the massive imbalance. However after looking into weaning it seems this is not a good idea as ingesting half or a quarter of a pill just keeps up the hormone imbalance. The oestrogen in the pill signals to your pituitary that you have enough oestrogen in your system so it effectively switches off your ovaries- this stops the production of those nasty androgens. If you take less of the dose it seems you are just confusing your body, your pituitary will probably respond to the dip in oestrogen by trying to send chemicals to the ovaries to prduce more hormones (which include androgens) and this just propels the hormone imbalance which causes hair loss. So i came off dianette back in september and have now been nearly 6 months clear. Im not going to lie I have had huge hair shedding, i take saw plametto as a natural anti-androgen as well as Soy isoflavones which i have heard mimic oestrogens in the body. I am hoping these help in some way, but Im not sure…all i know is i wish I had never gone on Dianette in the first place! What a nightmare!
Sarah
Hi Sarah,
You can see my progress and my latest post . I officially finished the weaning about 3 weeks ago and so far i think its gone well. In fact i think my hair has improved. I dont know how it will continue to affect me but i’m feeling hopeful.
What you said about how it could mess up your hormones even more is really interesting. Where did you find out about that? When i researched i didnt find anything particularly negative but if i did read what you did I may not have done it this way! However as i said so far i feel its been a positive experience. My body seemed to stop recognising that i was taking the quarter dose during the last 3 months so i feel that effectively i have been off the pill for 3 months plus 3 weeks.
I hope your shedding stops soon. Like you, i also kind of wish i never went on Dianette. I take saw palmetto too but not the isoflavones. I looked into them and went to buy them but a pharmacist warned me off.
Good luck 🙂
Hi sarah. I was just wondering how your hair loss is now? I posted a blog on the site but havent had a reply as yet. Have stopped dianette for over a year now and my hair is still falling out. Not sure if I should go back on it to see if that helps or try some herbal remedies. Any information is really appreciated. So scared im losing my hair. thanks Sara.
Sara,
I cant say that i know whats going on with you. I only know my own experiences. The latest on my hair loss is my latest post here https://quittingdianette.wordpress.com/ where I talk about how I have given up on trying to keep my hair and am now wearing supplemental hair instead. Possibly what I didnt mention was that i think it has stopped falling out now and i hope this is as bad as it will get. Who knows. Periods are still all over the place but i spoke to a nurse and she said this was to be expected.
Good luck.
Jo
Yeh, i’ve been on dianette for hair loss for about seven years now, but as getting older, there is more risk of clotting. I’m not sure what to do and am looking into alternatives! Good on you for setting this up. What a good idea.
Barbs
Hi
I am really interested in your story as it seems my situation is very similar. Would it br possible to get your email address so i can ask you a few questions and discuss?
Thanks
Boofle
Thanks Barb.
Boofle, of course you can. I’m trying to think of a way to swap email addresses without showing them in public. Are you on any of the hairloss forums by any chance where we could private message each other?
Hi. I have been reading your blog and would really appreciate if you could let me know how your hair loss is now? I was on dianette for years and came off it over a year ago as the doctor advised me to as being on it for a long time increases you chances of DVT. After I came off it I noticed my hair started falling out. I wouldnt say I had masses of the stuff to begin with so now it just seems to be getting thinner and thinner. The new hairs that have grown in at the front of my hair seem to be falling out now as well. I guess im really wanting a bit of advice from someone who knows whats going on. Im terified I lose my hair. Not really sure if I should go back on dianette, after all im sure thats what caused the problem in the first place. Somoene please help. You seem to read all these blogs but no one really keeps updating them, its really frustrating when all your searching for is a little reassurance. Hope things are well with you even if you dont repl. Thanks x
Hi
Sorry for late response, well I quit dianette exactly a year ago and to be honest my hair is much better now than it was for the first 6-8 months off it. I had the huge initial shed 3-4 months after quitting that I really thought would never end but it did! About 6 months from quitting it was still bad but new little hairs starting growing in and at about 9 months post the huge shed started to reduce and id say that a year on although it still falls out its nothing like how it was at the start. I did start high dose vitamin D, iron and multi vitamins at around the time it was really bad so I’m sure they helped with the recovery 🙂 hope that helps, keep us posted with your progress
Sarah x
Sarah, its nice to hear that your hair is better. How about your periods? is your cycle regular yet?
Hi Jo
Well I would love to say that my periods are back to being regular but sadly they are not. I have PCos and they were never actually regular so maybe that’s the norm for me but at the moment they are about every 2-3 months. To be honest I was just so glad my giant hair shed sunsided that I wasn’t too bothered that my periods hadnt regulated but I am now going to work on that by improving my diet and exercising more as iv got a bit slack.
Hope that helps
Sarah
Is anyone interested in forming a class action lawsuit against this drug? I have expereinced the same thing and have lived without my hair for the past 15 years. It is WRONG to put a person on a drug so that when they are feeling unwell and want to go off of it, they are subject to the problem again but worse. I have been waiting for others to come forward but I am so busy with my work, it is hard. If we could get women internationally to come together on this, we could form a class action law suit!
Please let me know girls,
Imogen H.
Hi Imogen,
Who put you on this drug? Were you forced to take it??
I agreed to going on Dianette because I was told it would help my hair and it did. The difference was great. I didnt research it at all, I just took my doctors word for it. Certainly now I might be more inclined to research drugs like this before taking them but I was desperate to get my hair back so in this case I probably would have taken it regardless.
Many other types of medications have nasty side effects but people stick with them because they do whatever they want it to do and are faced with the prospect of being ill again if they stop. Thats life isnt it? I know its different with a contraceptive pill, and i’m certainly not denying the negative side effects. Its just that a law suit for “being put on it” seems a bit extreme.
I did experience some unwanted side effects but they have certainly not been made worse since stopping apart from my hair shedding but it “only” went back to the way it was before i started on it. Thats what I was expecting.
I’m not angry about being made or told or suggested to take it because I went to my dermatologist asking for help and help, in the form of Dianette is what he gave me. I dont resent him for that. Sure, he never told me what would happen if i stopped it. But from the few professionals i’ve spoken to, none of them are aware that this happens when you stop, anyway. Its obviously all over the internet though
I resent the lack of interest and research into hairloss. Not the doctor who put me on it or the makers of Dianette.
Good luck Imogen.
I have been on Dianette for years to control my skin. I came off it in 2005, I was 40, and 5 months later suffered from dramatic hair loss. I saw a tricologist who rec’d I go back on the pill which I did. My hair recovered more or less. I’m now 47 and came off the pill again about 6 months ago, of course the same has happened and I’m experiencing a huge shed again. I will not be going back on Dianette due to my age and the fact that I have to face this problem sooner or later. I’ve looked into laser therapy but my tricologist tells me this is a waste of money because as soon as you stop your problem will return. My tricologist took a section of hair from my head and can tell what percentage is in the resting stage, currently 22% but was 38% so it’s going the right way. I would recommend this as its a good way of keeping on top of your loss without blowing it out of proportion. I also take florascene to keep my iron levels stable.
Hi Clare, Were you diagnosed with a form of Alopecia?
I had a tricologist look at my hair as well as Dr Fenton, a Harley Street dermatologist in London who also works for the NHS. I had all the tests done possible and yet i have to wear supplemental hair.
I eventually had to accept my hair wasnt going to come back but i hope that that isnt the case for you.
Thanks for your reply girls. I was put on dianette for my acne but only lost my hair when I came off of it years ago. I was put on dianette by a UK doctor but since the loss of my hair I have read about other women losing their hair and I think it is dreadful! Some of you may have been put on this to help you with your hair loss but I was not a person who ever had a problem with it in the first place. Coming off dianette caused the follicle at the top around the crown area to die. I will never get it back and have read blogs by other women. A similar drug called Yasmin has just recently been pulled up and there is a class action law suit. For what I have been through and the lack of knowledge of ALL the speacialists and doctors I have spoken with, I do not feel I am blowing it out of proportion. I do however feel that this is an individual thing and each experience can be coined differently. I look forward to saving up enough money for hair transplants by one of the best surgeons in the USA but I still hedge my bets on a law suit in the near future coming to pass. I look forward to that day as I will be jumping right on board with the others! For those of you who have benefited from dianette, obviously, you had a good doctor who knew your specific needs. Being put on a drug like dianette to impede my skin problem only to wind up years later with half the hair on my head has left very bitter taste in my mouth and in my heart.
Take care girls,
Imogen
Hi Imogen,
Of course you are not blowing it out of proportion. Hairloss has been the most awful thing to have ever happened to me and to know that i will never have the hair i used to have ever again is very saddening. It is something that is forever going to affect me, so of course I know exactly how you feel.
What i said in my first reply to you was because you said you were “experiencing the same thing” and so without elaborating, I assumed that you meant you had gone through the same thing as me ie you started with hairloss, were put on dianette and now are back with hairloss again now that you’re off it.
Since thats not the case, I can see why you would want to take someone to court over it because the last thing you expect when you want a solution to one problem is an even worse one. That is a totally different kettle of fish to my situation.
However I suspect that my hairloss is due to being on Microgynon. I was only on it two months but it made me feel very ill and depressed. I cant prove it though and at the time I never linked the two things.
Jo
Hi Jo,
Can you tell me, since stopping dianette has your skin broken out? I’ve been on dianette fro 5 years and am 3 months into weaning (half pill), I’m weaning to help prevent a big break out, just wondered how you got on, thanks, Sophie.
Hi Sophie,
Yes my skin has most definitely broken out with acne. I never had much of a problem at all with it prior to going on Dianette but its definitely a problem now. I have them either side of my chin, leading up to my cheeks either side. Most often I get a big pussey white head and eventually it goes but it leaves a red mark, like acne scarring. I havent looked into acne so i dont know the correct terminology. Plus i had them around my nose and upper lip too. I find that cod liver oil and omega 3,6,9 really seems to keep them at bay. But if i miss a day, one will come back.
How is the weaning going for you?
Jo
Hi Jo,
The weaning is going well so far, no break outs, but I have been on dianette years ago and came off with no real issues, just the odd spot. I’m reading another blog of 2 ladies who have come off successfully by weaning so am crossing my fingers. One thing about the hair loss is I developed it ON dianette, got to a point around 6 months ago where is was coming out in droves in the shower, I thought it seemed alot but thought i must be just noticing it more than normal, anyway, since going down to half a pill (3 months now) I’m noticing a massive reduction in how much comes out in the shower and when brushing, I’m confused as to why some women lose hair on dianette and some women take it for hair loss.
I also think that I may have more spots on in when I look back, plus sex drive completely gone, major emotions, what a horror story.
So in terms of weaning, do you think it was worth it? How long did you do it for? Maybe the acne would be worse if you hadn’t. My doctor strongly advised me against it due to spotting and my cycle being thrown out, but I’m not too fussed about that if I can minimise the side effects of coming off.
Thanks for your help, Sophie x
I replied with a longer message yesterday. Please note that there have been many women who were NOT suffering from any hair loss and were put on dianette for other issues like acne control who the lost most of their hair when coming off of it which I think is terrible. Has this topic been examined?
Imogen
Hi again Imogen,
I cant say that I was aware of ladies who lost hair after going on Dianette for something else. However I am a member of many hairloss forums and am aware of ladies who were put on Dianette to help their hairloss only to find that it made it worse.
Its not something that I have written about on my blog because, as the title says, its about MY journey coming off dianette. I dont claim to be an expert on all things related to Dianette. I decided to document my experience because when I tried to come off it, there was very little talk of the best way to go about it and I thought that writing about my experience could help others. As I said, I’m not an expert and i could copy and paste things off the internet all day long about how it could affect other people in different ways. And in doing that i could mislead someone, which i definitely do not want to do. I can only write about my experience.
Hair loss, no matter what the reason, is terrible. Alot of what you read in the press, on the internet etc is all centred on how awful it is when you lose your hair when going through chemo. And of course that is definitely a nightmare because the last thing you want when you are going through something like that, is to lose your hair, femininity, self confidence as well. But you know its coming, you can prepare for it, and as well you can be pretty sure that it will grow back just as before.
But with Androgenetic Alopecia (yes I am aware that there are other forms of alopecia too) there is relatively very little about losing your hair very slowly and gradually. And although its very slow, one day it can hit you suddenly, totally unexpectedly because you were losing it so slowly that you hardly noticed, and from that day on you feel dirty and unattractive and unworthy of anything. You dont lose your hair completely, just very nearly on top and so it looks tatty and dirty, no matter how long you take to style it.
If I have ever come across as cold and unemotional on here with regard to my hairloss, that will be because it is my second time with this experience. I went through the tears, the depression, the feeling of being unable to leave the house the first time round and before coming off Dianette, i think i knew that it was almost certain that i was going to lose it again. And because I was expecting it, I prepared for it mentally. Although having said that, that doesnt mean i didnt panic the second time round. I think I have blog posts on here where I was very panicky thinking the shedding was starting because my aim was to keep all the hair i regrew after losing it the first time. But once it started to happen, i calmed down… a bit. I had to use tons of Toppik to cover up the scalp and I obsessed about the thickness of my ponytail, because thats how I only wore my hair for 18 months. And then eventually I just gave up the fight and bought a topper.
Now that, was one of the best things I ever did in my whole life. Its given me my confidence back. But i wrote a whole blog post on that so i wont go into it again.
Good luck in your fight Imogen. xxx
I feel like ive made a big mistake. Ive been put on dianette a second time to help with my hair loss. The first time around i couldnt tolerate it and i came off then thats when my already existing androgenic alopecia kicked off worse. Ive been back on it for two months. Im scared that i wont be able to tolerate it again and then have to come off then my hair will come out in clumps again like last time and my forehead will go all shiny. And after hearing that i might develop acne after coming off scares me to death. But honestly i felt i had no other option. I tried other bc pills to help includig cilest and microgynon but they never really helped stop the shed. What am i doing? Have i made a big mistake?
I hope you havent boofle. But i cant be sure. Your side effects dont sound very nice at all 😦
I’ve just made a new blog post ladies. Feel free to read. https://quittingdianette.wordpress.com/