I finally have some time on my hands to sit down and write this post. I was keeping a blog on here, but I hadn't updated it in a while and I guess it got deleted.
My story: I hardly ever got acne when I was in high school. If I did, it was mostly on my forehead and cheeks, but it was very mild. In my early twenties, I started noticing that I had acne pretty much all the time. It was concentrated on the lower half of my face, and sometimes between my eyebrows. I started using a lot of over the counter stuff, but nothing worked. I eventually got the blue-light treatment. Six sessions over the course of three weeks. I wasn't 100% clear, but I remember it helping a lot. The effects lasted around six months. After that, the acne came back, so I went for another six sessions. This time, it didn't work at all. I eventually upgraded to the levulan treatment (the one that will put you out of work for a week or more). I saw success with it, but only temporary. In about a month, the acne came back. I had two more sessions. A month later, the acne came back again.
Around my 28th birthday, I had the worst breakout of my life (see the before pictures). It is honestly still very hard for me to look at those pictures, because my skin had NEVER looked that bad. For a few months prior, I had noticed my face was extremely oily, and the breakout just kept getting worse. When I took those pictures, I looked at them and decided I needed to be on prescription medicine ASAP. I am usually pretty opposed to taking pills, but I was desperate. I did a LOT of research, and it seemed like my acne was the exact kind that spironolactone successfully treated. Since I had just moved to a new city, I made an appointment with a general physician. He recommended spiro without me even asking for it. He gave me a blood test to check my hormone levels. When he called with my results, he said my testosterone levels were in the normal range, HOWEVER, it's the RATIO of testosterone to estrogen and other hormones that is the important part. My ratio was like 5:1 or something, I think the normal is 2:1 or around there. He was confident spironolactone would help.
I started on 50 mg. For a month, I saw no difference. He increased it to 100 mgs. For six weeks, my face just kept breaking out. Then, all of a sudden, the breakouts started drying up. That took another few weeks. I started the medicine at the end of August of 2013 By the end of October, I had no more acne. Since then, I have had AMAZING skin. I will get a blemish here and there, but since my acne initially cleared, I have had virtually no acne since.
You have to take these pills like a religion. I notice if I skip a day or two, or don't take them pretty much exactly 12 hours a part, I get blemishes. Give it time to work, too. Get your hormone levels tested! And do your research. I was very opposed to taking birth control (which has always been recommended to me by the dermatologist) because you will eventually have to come off of it, and it messes with your hormone levels. Spironolactone does nothing to your hormone levels. It simply blocks the excess androgen you have in your body, which in turn decreases oil production.
The after pictures were taken today (no makeup). As you can see, I was left with some pretty bad scarring, but this is easily covered with makeup. I am considering Fraxel for the right side of my face. I have been on spiro for 9 months now. It is a maintenance drug, and as soon as you stop taking it, it stops working. I will be on it until my 40s, probably.
I hope this will help some of you. I know what it's like to be frustrated by acne, trust me. I tried everything over the counter, prescription creams, light treatments, diet changes (never hurts to eat better, though!), etc. I finally found something that works for me, and I hope it will work for you too!
Hi, I'm on 25 mg of Spiro because my derm was afraid with my small figure I might have some bad side effects with too high a dosage. I have some questions like when did you notice the initial breakout period? How long it lasted for? And when did your skin stop feeling oily? Thanks! Good luck to you!
Hi everyone, sorry it took me so long to reply. I kind of forgot about this post.
First, to answer michi31's question, no, I don't plan on having children. But yes, if anyone isn't aware, spironolactone can cause serious birth defects (due to it blocking the androgen receptors in your body), so you cannot take it when you're trying to conceive.
It's hard for me to tell what was the 'initial breakout' and what was just my skin being horrific. As I said in my first post, I noticed my skin became oily one day and then it was like I woke up one day to 30 cysts on my face. I guess it was a period of a few weeks to a month. Once I started spiro, I continued breaking out for the first month, when I was on the 50 mgs. I saw no decrease in oil production, and no real effect whatsoever. When I bumped up to 100 mgs., my skin started to clear up within a week or so. All the spots on my face started getting very dry. It was a really disgusting process, honestly, but well worth it. I think I took my 'before' pictures in mid-August. By October 15th (I remember the day, because I am an accountant and we were out celebrating the end of a deadline), I had no active acne. Two months sound like a long time, but, in reality, there is no magic pill for acne that clears you overnight. I hated when people used to tell me 'be patient,' but the time is going to pass regardless, and I really had no choice but to be patient. I avoided the mirror like the plague, until finally, I realized I was starting to look like myself again. It has been over a year since I've been rid of acne, and while I will always have some scarring (unless I go for the Fraxel treatment, which is ridiculously expensive), my red marks continue to fade, and I continue to have almost no problem with acne. In the last four or five months, I have had one zit that was a pain to get rid of. Other than that, I've had no trouble at all.
When this all started happening to me, a dermatologist pushed Accutane pretty heavily for me. Several of them did, actually. However, I bluntly asked that if it's my hormones that are out of whack, wouldn't my acne just come right back after I stopped taking Accutane? He was honest and said it wouldn't be nearly as severe, but yes, it would most likely come back. My best advice I can give anyone going through something like this is to do your own research. I spent probably hundreds of hours in the end researching which medicine would be right for me, and how to find out what the root cause of my acne was. I am so glad I decided to get my hormone levels checked, and I'm also glad I had a doctor decent enough to say even though I didn't exactly have off-the-charts testosterone levels, I was exhibiting all the signs of androgen overproduction (oily skin, cystic acne on lower face, greasy hair, darkening body hair, etc), he would let me try the medicine anyway. And a lot of times, the first question your doctor will ask you (I came in asking about PCOS, which causes this type of acne) is if your periods are irregular (I'm addressing this to girls since only females can take spiro) or light. Mine were never irregular, and they were always heavy, and I am not overweight, so basically I was told I didn't 'fit the profile' of who usually benefits from this medication. I don't know, something in me KNEW this would work for me. I had tried everything else with absolutely zero results (or very temporary), so I figured if I treated the cause of the oil overproduction, I might find my answer. And I was right. Doctors are knowledgeable, but they see a ton of people all the time, and you have to look out for you. Find a doctor who will LISTEN to your concerns, and do your own research as to what medication fits your symptoms the best.
Spironolactone is a godsend. I sound like I'm trying to sell it or something, but I really just am still in shock of how well it worked for me. Again, you are never 'cured' of acne. It's not like Accutane. The minute you stop Spiro is the minute your acne comes back, unless you've gone through body changes and your hormones are no longer as wild as they once were. I am still pretty young, so I am assuming my levels are still high. Therefore, I'll keep refilling my prescription and keep not having acne!
PS: Just in my personal case, 25 mgs of Spiro would have done nothing for me. I was told by someone else on this board that it usually takes 100 mgs to truly make a difference. Again, that is different for everyone though. And Spiro can be very dangerous. It can cause your body to retain potassium, which can kill you. Your doctor will check your blood before he gives you the prescription and should check it again in a few months. Avoid high potassium foods. Drink lots of water. And go to the doctor if you start showing signs of high potassium levels. The number one sign of that is muscle cramps. Just a heads up!
I attached some pictures I took tonight. I always take these after I get out of the shower, which is why I'm always wearing the same thing!
By any chance did you have a period where the spironolactone suddenly stopped working? I found a mixture of spironolactone and diffren along with ocella helped for just over a year of keeping me clear, then suddenly last month it seemed to have stopped. Now I'm breaking out all over again. This is super depressing, I'm desperate to find someone who may have some answers or advice. Thank you in advanced.
Spiro stopped working for me too. Spiro increases estrogen, which can also lead to breakouts. Over time my estrogen increased because my periods were heavier and I gained weight. I'm on DIM to try and help this but so far I haven't had great results, looking into switching to a soy-free brand to see if that helps. Quote me if you want me to respond.
By any chance did you have a period where the spironolactone suddenly stopped working? I found a mixture of spironolactone and diffren along with ocella helped for just over a year of keeping me clear, then suddenly last month it seemed to have stopped. Now I'm breaking out all over again. This is super depressing, I'm desperate to find someone who may have some answers or advice. Thank you in advanced.
Hi Brittney,
Yes, actually, I had a few weeks maybe six months ago where I thought Spiro wasn't working anymore, but I think it was more because I wasn't taking the pills as religiously as I should. Not only do you have to take them twice a day, but you have to take them at the exact same time every day. Even now, as soon as I miss a dose or two, I start to break out. Nothing like before, but it's noticeable to me. I guess it all depends on how much you are taking.
As for the increased estrogen, Spiro doesn't increase anything in your body. It doesn't decrease anything either. It simply blocks the androgen receptors, leaving the amount of estrogen in your body the same as before. I have had some irregular periods, but other than that, no adverse symptoms. Spiro is not a hormonal pill like birth control. However, I'm sure, as with anything, your body can build up a resistance to it. With my acne, it came on so suddenly and severely (and at 27 years old!), that I knew something was wrong (it wasn't like I'd had acne like this all my life).
I take a very high dose of Spiro, so maybe you can look into increasing yours with your doctor's permission.
Hi Brittney,
Yes, actually, I had a few weeks maybe six months ago where I thought Spiro wasn't working anymore, but I think it was more because I wasn't taking the pills as religiously as I should. Not only do you have to take them twice a day, but you have to take them at the exact same time every day. Even now, as soon as I miss a dose or two, I start to break out. Nothing like before, but it's noticeable to me. I guess it all depends on how much you are taking.
As for the increased estrogen, Spiro doesn't increase anything in your body. It doesn't decrease anything either. It simply blocks the androgen receptors, leaving the amount of estrogen in your body the same as before. I have had some irregular periods, but other than that, no adverse symptoms. Spiro is not a hormonal pill like birth control. However, I'm sure, as with anything, your body can build up a resistance to it. With my acne, it came on so suddenly and severely (and at 27 years old!), that I knew something was wrong (it wasn't like I'd had acne like this all my life).
I take a very high dose of Spiro, so maybe you can look into increasing yours with your doctor's permission.
Hi there! I am so glad I found this thread. It has been a week now since I started taking Spiro with Diane 35. I take 100mg per day like you. Also similar to your experience, I did my own research which led me to Spiro and birth control. I recently moved to a new country where both Spiro and BC pills can be bought over the counter with no prescription. I came to the conclusion that my acne is hormonal because over the past couple of months, i get severe nodulocystic acne on my chin and forehead (more on my chin) around my period. And I've always had an oily face.
My question is: will spiro heal existing cysts? I developed two huge deep under-the-skin cysts almost a month ago, long before I started spiro and diane. And to my absolute frustration, they are still here and showing no signs of disappearing. They are just like big red lumps with NO head. I do hot compresses, apply PRID drawing salve and use sulfur soap everyday. NO improvement. Do you think I should get cortisone shots or wait for them to heal on their own? Im afraid they might leave a scar if i let them stay on my skin too long. Other than these 2 disgusting cysts, the IB I am experiencing is quite manageable (and i hope it stays that way!). Small breakouts on my chin and forehead but not as deep as these two. Thanks!
By the way, about me:
- I am 30 years old, female and prone to cystic acne. Since taking Accutane 10 years ago I would only get a cyst or two every few months.
- I was on Althea birth control for the last 4 years which couod be the reason why I stayed clear, instead of the Accutane.
- I stopped the BC pills several months ago which probably messed us my hormones because I am now getting new deep cysts more frequently
- I am now back on BC and trying Spiro for the first time. Got both over the counter since they don't need prescription where I live.
hey just wanted to let you know that spiro doesnt heal existing cysts. i would get injections for the cysts since you have had them for so long. i would just make sure they dilute the shot enough so you dont get atrophy.
Thanks! I just hope the dermatologist listens to me this time. The last time I was in, he just prescribed topicals and antibiotics that basically did NOTHING. It's so hard to see a new dermatologist who doesnt know my acne history. I miss my old derm so badly. 
( By the way, wouldn't diluting the shot make it less effective? Ive experienced cysts before that came back after a week because the cortisone shot wasn't strong enough. Thanks!