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wish_me_luck

My journey getting off Spironolactone and Diane-35...

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Hi everyone, 
Welcome to my journey (well, day 3 of it actually)! I'm technically new to acne.org but have been reading forum posts from here over the years, to help me with skin-related stuff. The things I've read on here have been invaluable and I really appreciate everyone's willingness to share their struggles and successes!! Since I'm just starting my own journey to get OFF Spiro and Diane-35, I thought it might be helpful for others out there to document it here. So here goes... (this first post will be SUPER long, sorry!).

Background:
My acne struggles started back in middle school (I'm now 33). I remember the very first pimple I got. It was in the exact middle of my chin and looked to me like a tomato seed. I wasn't too bothered by it, but then acne slowly started taking over more of my face and hurting my self-esteem. When I was 15 or 16, I tried various antibiotics for acne, with only minor success. I tried some topical ointments during this period too, but hated how much they dried out my skin and appeared to make things worse. At age 16/17, I started experimenting with BCPs. I believe the first one I tried was Ortho Tri-Cyclen. It didn't worsen my skin but also didn't make it better. I eventually got onto Diane-35 (perhaps age 18), which was the first thing that worked for me! I was really happy with the results, despite still getting some breakouts. My goal was never to have perfect skin, so I was happy with my progress. After being on it a few years, my doctor switched me to Yaz. My skin worsened a bit and back on Diane I went! I have been on it every since...

When I was 24, I started grad school, which was a very stressful time. I started noticing some more breakouts - nothing too bad but kind of annoying with how well my skin had been doing. I dabbled with various homemade masks, apple cider vinegar, no diary... I eventually read about Spironolactone on this website. I was convinced it was for me! Since this was so long ago now, I honestly don't know if I truly had hormonal acne... but I convinced myself and my doctor that Spiro was a good fit. I think I finally started Spiro when I was 26 or 27, starting with 50 mg/day and then upping it to 100mg after several months. I found my miracle drug!! OMG...perfectly clear skin, decreased oil, less frequent washing of hair needed (I can legit go 5 days without washing it), etc. I never experienced any "bad" side effects of Spiro. Yes, I would still get the odd minor breakout, but the pimples disappeared so much more quickly! I was hooked! And, I've been on it ever since...

Currently:
I'm now 33 and still have awesome skin. However, my husband and I are thinking about expanding our family next year, so I need to get off Spiro and Diane... my crutches :( I have been reading HORROR stories about this process, with very few positive, or even neutral, experiences out there. After reading some of these, I've actually wondered to myself if I want a baby THAT badly... horrible to admit, but the question has gone through my mind several times. But the answer is "YES, I do." So here begins my journey. My plan is to do this slowly (I'm thinking we start TTC late next summer or early fall) and have other things in place to help out my skin and my endocrine system along the way. Here's what I'm currently doing for skincare/makeup.

- I only use medical-grade skincare products. I've been transitioning over to them for the past year or so, from the various yummy smelling things I used to buy from Sephora (that 20 years olds would recommend....seriously, so much wasted money!). Since hitting my 30's (and honestly sometimes forgetting that I ever had bad skin because it's been so good), I've been more concerned with anti-aging products, sun protection, etc. I almost exclusively use Skinceuticals - their Vitamin C E Ferulic, various hydrating serums, eye and face moisturizers, and a hydrating face mask. I also use their SPF 50 sun block for face and eyes. My face wash is by ZO Skin Health.
- I use mineral makeup (this was a recent change, although I used a different one years ago). The brand is Glo Mineral and I use their primer and pressed powder. But honestly, most days I only use the Skinceuticals sun block because it's slightly tinted and I don't like wearing makeup that often. 

Since switching over to mineral makeup and getting rid of anything in my skincare routine that wasn't medical-grade, my skin has been better than ever. Yes, these products are expensive but there is a reason why.

My plan to get off Spiro and Diane-35:
- October 16 - first day at 50mg/day of Spiro (down from 100mg)
- Three days ago, I cut all my Spiro pills in half! My plan is to drop down to 50mg/day for the next 4-6 weeks, depending on how my skin/body reacts. If the side effects are too much, I will go up to 75mg. 
- Once my body adjusts to 50mg/day and I've been on it for at least 4 weeks, I will drop to 25mg/day and take the same approach.
- I may drop down to 12.5mg before eliminating it entirely. I have the time to do this slowly so I might as well if it helps my body adjust.
- I will continue on Diane-35 until I'm fully off Spiro. At this point, I may request to go on another BCP to help with the transition from using Diane to nothing. I haven't talked to my doctor about this yet but will when the time comes.

Other things I will be doing:
- I will start taking Lorne Vanderhaeghe's ESTROsmart today (October 18). It's a natural supplement to help regulate hormones and has tons of amazing reviews written on it. I actually read a success story about someone going off Spiro with the help of this. It's also safe to take while TTC and pregnant (there have been animal studies conducted). I will start with 2 pills per day and potentially up it to 4 if needed.
- I have ordered Zymogen's Houttuynia Cordata Ferment Serum and will incorporate this into my morning and nighttime skin routine. Again, I read success stories of people going off Spiro with the help of this, as well as simply using it for hormonal acne when nothing else worked.
- Tons and tons of water!! This will hopefully help with some of the negative side effects of going off Spiro (i.e., MAJOR BLOATING...ughhhh).
- Healthy eating and exercise, which I already do.
-  I read that spearmint can be great for skin and acne, so I think I will go buy some spearmint tea and start drinking it everyday!
- If I start breaking out during this process, I may reduce my dairy intake. I do believe this has helped me in the past. I just love dairy so much and won't consider it unless I think it's needed.

I don't know how many people this level of detail will be helpful for...but hopefully for someone out there who is also freaking out about going off these types of meds. Maybe my skin will be perfectly fine, but we all know how horrible and all-consuming acne can be. I am desperately hoping for this process to be as smooth as possible.

xo   wish_me_luck

P.S. I will try to update weekly, even if there hasn't been much change (which is actually what I want!!).
 

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Regarding the weaning off idea i personally think it s a good way to go. I have read stories of girls weaning off bc pill as well (cutting the dosage and stopping them completely after 9-12 months) and actually helped them because they didn t experienced the full face.breakout after 2-3 months off pill (when stopped cold turkey). From what i have read in my reasearches.most of them experienced pimples during their weaning off and after completly stopping them more greasy hair and skin and some blemishes but nothing scary.  But as you said you don t hope for perfect skin (neither do i). While weaning off bc pill they are not having contraceptive effects so take that into consideration. 
Also about dairy i think it s necessary to cut it off or at least  reduce it during that period. Especially milk. It has hormones and inflamatory effect. I know that sucks cuz it s sooo good.
Wish you good health!

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On 2017-10-24 at 7:16 AM, Daisymylove said:

Regarding the weaning off idea i personally think it s a good way to go. I have read stories of girls weaning off bc pill as well (cutting the dosage and stopping them completely after 9-12 months) and actually helped them because they didn t experienced the full face.breakout after 2-3 months off pill (when stopped cold turkey). From what i have read in my reasearches.most of them experienced pimples during their weaning off and after completly stopping them more greasy hair and skin and some blemishes but nothing scary.  But as you said you don t hope for perfect skin (neither do i). While weaning off bc pill they are not having contraceptive effects so take that into consideration. 
Also about dairy i think it s necessary to cut it off or at least  reduce it during that period. Especially milk. It has hormones and inflamatory effect. I know that sucks cuz it s sooo good.
Wish you good health!

Thanks Daisymylove for your input! I've never thought about weaning of birth control as well, but it makes sense. I'll have to do more reading about it when I'm ready to start thinking about it. 

Ugh, I agree about dairy. I've heard so many stories about dairy being a major culprit behind people's acne. I'm such a huge lover of Greek yogurt, cottage cheese, every other type of cheese. At the moment, I'm eating dairy as usual but may definitely cut back in the future. We shall see!

 

Here's my 1-week update!

So far, so good. I know it's only been a week, which obviously isn't enough time to draw any conclusions... but I'm still happy to report that all is going well. I've been on 50 mg/day of Spiro (down from 100) for 9 days, I've been taking EstroSmart for 7, and I start using Zymogen products last Friday (so 5 days). I haven't noticed any bloating (side effect of going on Spiro), weight changes, increased oiliness, or acne. I've had a couple small spots that have gone away quickly. Nothing out of the ordinary though. That's all for now!

Edited by wish_me_luck

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Here's my 2-week update:
Things are still going well. I have not had any breakouts or noticed any increase in oiliness. I've now been on Spiro at 50 mg for 17 days. I'm still doing everything else as described above, but have not changed my diet (i.e., reduced dairy) at all. And I'm actually loving the Zymogen products!! The serum is super refreshing (has kind of a funny smell, but I like it) and I just feel like it's doing good things for my skin. The moisturizer that I'm using along with it (Zymogen Centella Ferment cream) is very hydrating, which is great since it's now full blown winter where I live. The only things I HAVE noticed this past week was an increase in bloating in my abdominal area. A few nights, it was actually super uncomfortable. It seems to have gotten a bit better in the last couple of days. I'm not certain it's from the reduction in Spiro, because I kind of anticipated I'd notice bloating elsewhere (it seems like many people notice it in their face)... who knows... Anyway, hopefully I get to keep writing these boring, non-eventful updates!

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Hi @wish_me_luck - thank you for posting these updates, and I hope you will continue! I just Googled "how to go off Spironolactone," and your thread came up... it's so helpful, as I am hoping to do the same thing soon. I am on 100mg a day, started taking it for my skin after I went off the pill. I'm 43 now and just want to be done with it. I actually had an accidental pregnancy last year (my first at 42), and while my fiance and I had mostly decided that we weren't going to have kids, it was a bummer to have the choice taken out of our hands by the Spiro - my doctor expressed major concerns about it, even if I were to go off of it immediately. So, you go girl, and please keep taking us for the ride. I hope all continues to go smoothly!

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Hello to anyone who has read my posts! Sorry I missed last week's update. I've been travelling for a week and didn't get a chance to post. 
Anyway, this isn't the update I wanted to give... I up'ed my dose of Spiro, back to 100 mg :( It actually had nothing to do with acne. Rather, I've been dealing with some malar edema (swelling in specific area of cheeks) for the past several months, and I noticed that in the last few weeks it has become much more noticeable. I have been super bummed about it all along, so seeing it get worse was really upsetting. I realized that perhaps it's the drop in Spiro that caused it to get worse, since fluid retention is a side effect of going off Spiro. So, while I deal with trying to figure out the original cause of the edema and treat if it possible, I've decided to delay going off Spiro. AHHHH, this is so frustrating!!!

I will say that I was on my half dose for almost 4 weeks and it was going really well otherwise. I literally had not had any breakouts, increased oiliness, etc. and was hopeful that my journey would be smooth. I do think that cutting back slowly like I was doing (or perhaps even slower if you aren't in a rush) and allowing your body sufficient time to get used to each reduced dose really helps. Perhaps the products I was using (the EstroSmart and Zymogen products) were keeping my skin and body (with the exception of the malar edema) in check. I plan to continue using these products, so that they are already part of my routine and when I decide to cut back Spiro again.

I will come back and post here when I begin my journey again. I am so upset that it had to be cut short... :( 

7 hours ago, emseabee said:

Hi @wish_me_luck - thank you for posting these updates, and I hope you will continue! I just Googled "how to go off Spironolactone," and your thread came up... it's so helpful, as I am hoping to do the same thing soon. I am on 100mg a day, started taking it for my skin after I went off the pill. I'm 43 now and just want to be done with it. I actually had an accidental pregnancy last year (my first at 42), and while my fiance and I had mostly decided that we weren't going to have kids, it was a bummer to have the choice taken out of our hands by the Spiro - my doctor expressed major concerns about it, even if I were to go off of it immediately. So, you go girl, and please keep taking us for the ride. I hope all continues to go smoothly!

Hello!! Thanks for your post and encouragement. As you'll see from the post I just made, I had to up my dose again. Another health issue that may have been exacerbated by my drop in Spiro needs to be dealt with first. I'm so sorry I won't have anymore updates for a while, since I don't know when I'll decide to try again. But, since everything was going really smoothly otherwise, I do recommend the products and tapering schedule I was using. Who knows what I might have said at the 2-month mark, but the first month was going well... 

I'm sorry to hear about your pregnancy while on Spiro. I agree that it's not worth it to risk it, but dang... hopefully you'll be able to get off it soon, and  Spiro won't have the power to make any more decisions for you. If you find some products or tips that work, make sure to update us!! And I'll come back and update as soon as I start this process again. Good luck!

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I joined Acne.org just to insert myself into this discussion. I am in the same boat as you with starting to plan for pregnancy and the thought of going off spiro is terrifying.  I actually ran out of meds a few weeks ago and 7 days without it my skin erupted. It really does make me panic and regress to a 6th-grader again.  Even questioning if I even want kids!!  I also starting reading up how the birth control pill totally messes up all your hormones for long-term. 

Ill be over here having an anxiety attack about all this.  Any updates I would love to know. It’s nice to see someone else is in such a unique situation. 

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On 27.12.2017 at 0:35 AM, geechi3 said:

I joined Acne.org just to insert myself into this discussion. I am in the same boat as you with starting to plan for pregnancy and the thought of going off spiro is terrifying.  I actually ran out of meds a few weeks ago and 7 days without it my skin erupted. It really does make me panic and regress to a 6th-grader again.  Even questioning if I even want kids!!  I also starting reading up how the birth control pill totally messes up all your hormones for long-term. 

Ill be over here having an anxiety attack about all this.  Any updates I would love to know. It’s nice to see someone else is in such a unique situation. 

Please keep us updated about your jorney if you decide weaning off bc pill or spiro. From what i understand bc pills do not mess your hormones per se. What is happening is actually some women take longer to come back to their natural balanced hormones after stopping hormonal replacement pills. If there were hormonal problems prior to bc pill after you stop it you just go back to the natural unbalanced hormones. Yes i know it sucks! I wish u good luck in this journey and to fall pregnant quick! 

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On 2017-11-15 at 12:27 AM, wish_me_luck said:

Hello to anyone who has read my posts! Sorry I missed last week's update. I've been travelling for a week and didn't get a chance to post. 
Anyway, this isn't the update I wanted to give... I up'ed my dose of Spiro, back to 100 mg :( It actually had nothing to do with acne. Rather, I've been dealing with some malar edema (swelling in specific area of cheeks) for the past several months, and I noticed that in the last few weeks it has become much more noticeable. I have been super bummed about it all along, so seeing it get worse was really upsetting. I realized that perhaps it's the drop in Spiro that caused it to get worse, since fluid retention is a side effect of going off Spiro. So, while I deal with trying to figure out the original cause of the edema and treat if it possible, I've decided to delay going off Spiro. AHHHH, this is so frustrating!!!

I will say that I was on my half dose for almost 4 weeks and it was going really well otherwise. I literally had not had any breakouts, increased oiliness, etc. and was hopeful that my journey would be smooth. I do think that cutting back slowly like I was doing (or perhaps even slower if you aren't in a rush) and allowing your body sufficient time to get used to each reduced dose really helps. Perhaps the products I was using (the EstroSmart and Zymogen products) were keeping my skin and body (with the exception of the malar edema) in check. I plan to continue using these products, so that they are already part of my routine and when I decide to cut back Spiro again.

I will come back and post here when I begin my journey again. I am so upset that it had to be cut short... :( 

Hello!! Thanks for your post and encouragement. As you'll see from the post I just made, I had to up my dose again. Another health issue that may have been exacerbated by my drop in Spiro needs to be dealt with first. I'm so sorry I won't have anymore updates for a while, since I don't know when I'll decide to try again. But, since everything was going really smoothly otherwise, I do recommend the products and tapering schedule I was using. Who knows what I might have said at the 2-month mark, but the first month was going well... 

I'm sorry to hear about your pregnancy while on Spiro. I agree that it's not worth it to risk it, but dang... hopefully you'll be able to get off it soon, and  Spiro won't have the power to make any more decisions for you. If you find some products or tips that work, make sure to update us!! And I'll come back and update as soon as I start this process again. Good luck!
Hey!!! Any updates!?

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Hello everyone! I also just signed up for this site to be apart of this thread specifically since I am in the same boat!

My husband and I would like to TTC but I haven't weaned off my spirno yet... We are 32, ready to start trying so I need to get serious but to be honest, I am more afraid of gaining the water weight back than I am about having acne. I lost 10lbs of water on this medication and feel great. My doctor put me on 200mg/day, which I have never seen anyone say that they take, so I may have a long weaning process. We are leaving for a beach vacation tomorrow so I may start cutting back once we get back. There never seems to be a good time to do it.

What I would like the most is advice on how to handle the bloat and weight gain. I'm wondering if I may have to do a full on raw diet, no alcohol type regimen. I eat healthy for the most part and workout regularly, but I do enjoy wine, going out to eat, and fun nights out. Any tips and tricks would help and please keep posting if you guys are weaning ...I almost wish I never went on this drug. What a blessing and a curse!

Edited by HH1231

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On 10/27/2018 at 8:53 AM, HH1231 said:

Hello everyone! I also just signed up for this site to be apart of this thread specifically since I am in the same boat!

My husband and I would like to TTC but I haven't weaned off my spirno yet... We are 32, ready to start trying so I need to get serious but to be honest, I am more afraid of gaining the water weight back than I am about having acne. I lost 10lbs of water on this medication and feel great. My doctor put me on 200mg/day, which I have never seen anyone say that they take, so I may have a long weaning process. We are leaving for a beach vacation tomorrow so I may start cutting back once we get back. There never seems to be a good time to do it.

What I would like the most is advice on how to handle the bloat and weight gain. I'm wondering if I may have to do a full on raw diet, no alcohol type regimen. I eat healthy for the most part and workout regularly, but I do enjoy wine, going out to eat, and fun nights out. Any tips and tricks would help and please keep posting if you guys are weaning ...I almost wish I never went on this drug. What a blessing and a curse!

Im with you. I’m on the 200mg per day of spiro and I’ve never seen anyone else say they’re on that. I am very afraid of getting off spiro but my husband and I want our start a family in the near future so I know I’ll have to eventually. Spiro has been a life saver for me and I have no idea what I’ll do without it. But it and my birth control have taken my sex drive too. I’ve been having a lot of problems lately. I thought about going off my bc and seeing if that would help but I really don’t know what to do.

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