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Weird Spironolactone Side Effect - Anyone Else Experienced This?

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(@moonlitriver)

Posted : 04/22/2017 4:56 am

Okay so, I've been scouring the internet trying to find accounts of anyone who's experienced something similar as a side effect of spironolactone and come up with zilch, so I thought where better to ask than here! I know a lot of people here take this medication so I'm really hoping one or other of you can help shed some light on the situation for me.

So basically the spironolactone seems to be causing me to get hot flushing, but only on my head/face, the rest of me stays cold. This makes my skin flare up looking really red and blotchy all over, and any active acne or hyperpigmentation from old acne shows up in seriously high relief making my skin look about 10x worse than it actually is. It seems to happen as a response to heat, most often when I'm cooking or eating hot food, but can also happen just from sitting in a warm room. In fact it's actually got to the point where I need the rest of my body to feel genuinely cold in order for my facial skin not to get hot and flare up like this, which seems kind of ridiculous as I'm constantly shivering! The flaring does go down once my face cools a bit (having a fan directly on it seems to help a lot) but it can take anything up to two hours to do so on a bad flare so it's making me afraid to eat and even more afraid to go out and do stuff in case it does it sometime when I'm not expecting it because it looks sooooo bad when it does!

My first question is, has anyone else experienced this? I'm trying to work out whether it is definitely related to the spironolactone (although it never happened before I took the drug) but can't find it listed as a side effect in any of the literature. 

Secondly, do you think there's anything I can do about it other than come off the drug? I recently came down off 150mg to 100mg a day and it has helped to some degree (the flaring seems to go down a bit quicker than before and is generally a little less severe) but it is still doing it and is still posing me a significant problem. I don't want to have to come off the drug completely because it's really helping my breakouts!

I should probably also mention that I have already posed these questions to my dermatologist and she'd never heard of this happening, but admitted that she's only ever treated a few people with spironolactone so doesn't have much experience with the drug. She didn't think it was anything to worry about from a medical perspective since my bloods all came back fine but it's really starting to get to me aesthetically!

Thank you so much in advance to anyone who can help me with this mysterious problem. :)

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(@ashleyo1991)

Posted : 04/22/2017 4:26 pm

Hmm I haven't experienced this side effect. Granted, I'm only on 25mg right now. Maybe you should try reducing the dosage again? I know you said it's making your skin look worse because of the redness, but is your acne subsiding at least?

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(@moonlitriver)

Posted : 04/23/2017 2:34 am

10 hours ago, AshleyO1991 said:

Hmm I haven't experienced this side effect. Granted, I'm only on 25mg right now. Maybe you should try reducing the dosage again? I know you said it's making your skin look worse because of the redness, but is your acne subsiding at least?

Hi, thank you for your response, I really appreciate it! I suppose I could try reducing the dose further. This morning marks a week on the lower 100mg dosage for me and my dermatologist said spironolactone has quite a long half-life so I might give it another week and see if it will settle on this one first. The spironolactone has definitely improved my skin (though not actually cleared it yet) and it's the first medication for ages that has been able to do that, hence wanting to avoid coming off it completely if I possibly can!

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(@moonlitriver)

Posted : 04/24/2017 1:14 pm

Anybody else experienced anything like this on Spironolactone please?

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(@moonlitriver)

Posted : 04/26/2017 10:01 am

I really hate the idea of begging for responses.... but please guys, has anyone ever experienced this side effect on Spironolactone? Or is anybody able to offer some explanation or suggest anything that might help me with it? It's really restricting my life right now, as much or more so than the acne itself. :( Thanks.

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(@squee)

Posted : 04/29/2017 8:17 am

I'm not a doctor but it sounds like you could be having an allergic reaction. Not sure why your derm wouldn't consider that since face flushing seems like a very plausible indicator of a reaction. You could also double check (with your derm or maybe with the pharmacist - not sure how it works in the UK) that there isn't a negative interaction with anything else you're taking.

I've been on spiro for 3 years and have never experienced this.

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MemberMember
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(@moonlitriver)

Posted : 05/01/2017 2:35 pm

On 4/29/2017 at 2:17 PM, squee said:

I'm not a doctor but it sounds like you could be having an allergic reaction. Not sure why your derm wouldn't consider that since face flushing seems like a very plausible indicator of a reaction. You could also double check (with your derm or maybe with the pharmacist - not sure how it works in the UK) that there isn't a negative interaction with anything else you're taking.

I've been on spiro for 3 years and have never experienced this.

Hi, thank you so much for replying to me. My derm didn't say anything about an allergic reaction, but then she might not have believed me about what was happening seeing as she wasn't able to see it for herself, I don't know. It doesn't stick around for long like allergic rashes I've had in the past so it's hard to show a doctor. I am on quite a lot of medication so I will look into whether any of them are known to react badly together. I tried taking antihistamine tablets but they had no effect on it. I have just recently come down with the flu which seems to have really exacerbated it as well so that's not exactly helping! Thank you again for sharing your thoughts, I really appreciate it.

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(@moonlitriver)

Posted : 05/13/2017 11:47 am

Still desperately wondering if anyone else has experienced this please? Am I the only one?

With the weather starting to heat up it's really becoming a problem, I wish I could work out what's going on and how to stop it and whether it is related to the Spironolactone or not.

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(@srs)

Posted : 02/06/2018 8:51 pm

Hey there,

I was diagnosed with rosacea a few months after I bumped by Spiro dose up to 100 mg. My derm told me that the two couldn't be connectedso I just accepted my fate and dealt with the hot flushing, weird pimples, and awful rashes that came along with this new skin disorder. And just when I thought I'd kicked my skin woes to the side (Spiro cleared cystic acne up 100% for me)....

It's important to note that I didn't have ANY of these flushing symptoms (got worse with alcohol, spicy food, heat, vigorous excerise, etc), until a few months after I bumped up my Spiro dose to 100 mg. I recently reduced my dose to 75 mg (on a whim) and have noticed a serious reduction in my flushing. My skin is smoother than it's been since the Spiro started working a few years ago. It's not perfect (I still can flush!) but it's different, for sure.

I wonder if there's a connection. It's a blood pressure medication, so I'm wondering if it affected my vascular system (my family has some weird genetic issues in the department, so it could be a thing). Who knows! Reduce your doseyou might see an improvement.

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(@hapa-bae)

Posted : 04/29/2018 10:43 pm

Hey moonlit, Im dealing with this now. Its extremely embarrassing, as it happens almost constantly. It mostly happens when Im stressed about even the mildest of things. Sometimes Im sitting in my room thinking about forgetting to thaw some meat for dinner or about paying a small bill and turn insanely hot and red in the face and neck. Almost anything makes me react this way. I had blood work and urinalysis and Doc saw nothing. I stopped spiro for a week and the flushing almost completely stopped, but the acne returned. Ive heard of beta blockers helping but my doc said I should just stop spiro, not understanding how severe my acne is without it. Its affecting me to the point of not wanting to socialize anymore, like I did when I had acne, ironically enough.

Have u kind a solution for your problem? Im desperate for answers as well. My doctor thinks its the hormonal affect spiro has on the body.

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(@ange4)

Posted : 01/04/2019 5:42 pm

Has anyone had any updates on the correlation between Spironolactone a d facial flushing? I too have this issue and it is life altering. I was originally diagnosed with rosacea but then after 3 dermatologist couldnt help me, I was sent to our local university. They checked every kind of medical condition and all came up negative. I agreed for them to biopsy my face as the flushing was horrible and affected with heat, stress, emotions and change in temperature. The results came back stating that it was a phototoxic reaction to something like medication. I stopped 3 meds that they thought could be the culprit and it is not better but I am still on Spironolactone. I am discontinuing that med as if tomorrow. Has anyone that has had that problem with Spiro had good results after discontinued use? Please let me know as this has altered my life completely.

Thank you in advance.

Hapa bae liked
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(@hapa-bae)

Posted : 01/07/2019 11:16 am

Hi Ange4,

After talking to several dermatologists, reading up on rosacea, and reading stories from others with rosacea, Ive come to the conclusion that the severe flushing Im dealing with is, in fact, rosacea. I thought it was Spiro because my flushing calmed down significantly when I stopped my Spiro for a few weeks, but those same few weeks I had stopped drinking wine and other liquors. Alcohol is a very common trigger for rosacea sufferers because its a vasodilator.I live in Hawaii but no longer go to the beach and stay out of the sun because that will cause me to blush severely for a few days, as well. Drinking anything hot, hot yoga, sun, hot showers are all triggers for me, as is any amount of stress. Because this happened so often in public before I was able to take steps to deal with it, its now become a phobia of mine and I get extremely stressed in social situations which just makes it worse. I am using a cream called Rhofade and it does constrict the blood vessels in the face and reduces redness. It seems to help some but when Im very stressed, it cant prevent the flushing. Wish I could offer you a better suggestion. All I can say is that you have to make a lot of adjustments to the way you live your life to try to slow the disease process. I will also be trying micro Botox soon to see if this helps. Ill keep you posted

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(@ange4)

Posted : 01/09/2019 10:25 pm

Hi Hapa bae, thank you for your reply. I have whats called neurogenic rosacea. I flush all day long. I carry a spray bottle and handheld fan with me everywhere even in my house. I live in Florida which makes this condition awful. I do not go outside except to go to the store, the office my kids schools etc. everywhere I go I have to be in air conditioning. My life has completely changed as I knew it. I have four kids and cannot watch baseball or softball games except from an AC car. I do not have food triggers as mine is neurogenic. I have tried Rhofade and initially loved it but found that after awhile I got too much rebound flushing. I also have had Botox in my cheeks this past summer to treat the rosacea and unfortunately it didnt work for me. I heard that it only works in about 30% of patients. It also had migrated so I looked as if I had a stroke until it wore off about three months later. I also had four IPLtreatments this past summer and if anything it exacerbated my type of rosacea. Iwas told by the head Dr. At the university I go to that my case has been the most difficult case he has dealt with in his 41 yrs of practice. I was hopeful about the Spironolactone but as each day passes that I am off that med, my condition doesnt improve. I called my doctors office this afternoon extremely emotional because I am in so much pain. I told them that I want a script for the compounded cream with ketamine and Amitriptyline. There havebeen people that have had improvement with it. As I type this I am lying in bed with twofans blasting my face. I sleep that way too. I also have to sleep with an ice pack type thing in my pillow case with added small ice packs for my cheeks and ears. My trigger is heat. But, even when the temp in my house is 68-70, I must have constant air flow. I am so happy that I can connect with others that share this horrible condition although I would not wish this on anyone. I also flush from emotion, stress and change in temperature. I started intermittent flushing in 2015. But, it didnt get bad until 2018. The pics I have are horrendous. I would take daily pics throughout the day to kind of track things and also have it to show to the dr. The medical students along with my dr are trying to investigate more thinking that it still is medication related. I came off two thyroid meds, doxycycline and carvedilol. That was two months ago and I came off spirinolactone five days ago. If it was related to meds it would be getting better dont you think? Im sorry I went on so long. I should hear back from dr tomorrow about cream. I am definitely trying it. I think they will prescribe it but if not my husband is Dr and can. My best wishes to you and hopefully the Botox thing works for you.

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(@hapa-bae)

Posted : 01/12/2019 7:50 pm

That sounds absolutely terrible Ange4! Im so sorry. My heart goes out to u. Please let me know if the compounding cream works for you and if I come across any solutions Ill be sure to share with you. I spent the last week in the Midwest in 40 degree weather and my face felt fantastic. Living in a hot and humid place like Hawaii or Florida seems to just be the worst when it comes to this condition.

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(@ange4)

Posted : 01/17/2019 9:00 pm

Hi Hapa bae,

I had a horrible weekend as my face flushed really bad and got very swollen. I had a couple of areas that had these little clear fluid filled blisters like things (very small) a pic didnt show it well. They were very itchy so I had to put some steroid cream on them for a couple of days. I was in tremendous pain. I am not scheduled to go to the university for two more weeks so I went and saw my other dermatologist today. He is somewhat stumped also but is looking into pemphigus flor something. Mainly because of these areas of blistering but that rarely happens and in person it looks like atopic dermatitis which I had growing up. I checked this thing out online later and I definitely do not have this. These drs are just both stumped. This dr used to run the derm. Dept at rush Presbyterian in Chicago so I respect his expertise but I dont have this thing at all. Both drs are telling me that sunlight may be a problem but I never see the sun because I am so heat sensitive. They say I get it through my car windows but I dont think that is the problem either. I see this dr again next week. He is checking into this ketamine cream andsays he is willing to have me try it. He says that I may have neurogenic rosacea and he may want me to start Plaquenil or propanol. Id rather stick to non systemic meds first but I cant live like this anymore. Right now as I type this I have my two trusty fans blasting on me and will be sleeping with ice packs on the face like usual. It is a miserable existence but I will find help. I just hope its soon. How are you doing? Im from the Midwest and I too love the cool air on my skin. Last night I slept with the windows open and it was 59 degrees in my room when I woke up. My body is normal to temp. I just bundle up. Its my face that feels like Im in a different continent. Have you tried anything that has worked for you? Its so nice to connect with someone who knows what youre going through. Good luck and Ill keep you posted on my next two dr appts.

Thanks.

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(@carebear27)

Posted : 04/26/2023 1:24 pm

@moonlitriver any updates?? I have had the same flushing and hot red face and even some little visible blood vessels in my face since spironolactone. Im taking it to prevent acne from the BHRT testosterone Im doing. (Im 43, had a hysterectomy for symptomatic fibroids.) I was on 50mg spironolactone, then cut to 25mg. I started spiro with bio-identical hormones so I cant tell if its the hormones or the spiro.

I also stopped taking magnesium when I had a major face red flare after using a topical magnesium spray. Eating avocados seems to make my redness worse. I read that spiro can increase magnesium and you shouldnt take magnesium with it. But I also read it can lower magnesium. My sodium level is low. I think the spiro is causing electrolyte imbalances.

The other weird symptom Im having is circulation. Its like my blood wont move. My hands will get cold and pale, my feet kind of blue/purple, even when face is hot. especially if I wash them in cold water. if I get cold its very hard to warm up. Im super healthy, not overweight.

I think it could be vasodilation causing redness. Spiro acts as a CCB, calcium channel blocker, which keeps calcium from constricting your blood vessels (used for hypertension), blood vessels get dilated. I just found a medical report of rosacea from CCBs, so if spiro acts like a CCB then it could cause rosacea too. And circulation problems I would guess! Im stopping spiro and adding licorice and saw palmetto and EGCG (green tea) which are all supposed to blocks androgens and DHT.

I related to another comment about having weird genetic cardiovascular issues. I have low blood pressure and my blood thins easily (almost black out when standing if I take ginger, fish oil, etc etc seems everything thins the blood) my dad cant take fish oil or he bleeds. Omega 3s are anticoagulants.

Anyway! It might be the CCB effect of spiro. Or the electrolyte disturbance of spiro. Vasodilation.

any new discoveries since you posted in 2017?? Thanks!

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(@hannahlastname)

Posted : 05/16/2023 11:27 pm

I created an account just to reply to this comment. I was on 50 mg spiro and had these symptoms, then eventually a rash. I had to stop the spiro and Ill be starting accutane next month.

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(@ninag)

Posted : 02/17/2024 3:04 am

I believe the spiro could be contributing to rosacea. I was on accutane 4 years ago, and they put me on spironolactone 50mg as a continuous long-term treatment. For 3.5 yrs my skin was wonderful, it cleared up my cystic acne and allowed my skin to heal.

6 months ago I started breaking out on my cheeks, REALLY badly. But it wasn't my usual acne, it wasn't responding to anything so my derm bumped me to 100mg and it still did absolutely nothing. A few months ago it got so bad that I went to the local clinic and they sent me home with doxy. And my skin cleared up! For a month. And then it came back even stronger, my derm put me on a concentrated dose of doxy, but within a few weeks my skin would just break out, flush really terribly, get puffy.

I went on a trip recently and forgot to bring my spiro. So for 5 days I was on doxy and didn't have any spiro, and my skin completely went back to normal. Like normal normal. No flushing, no weird pustules or rash on my cheeks.

SO my theory is that either spiro can contribute, if not cause, rosacea. Or possibly that the spiro and doxy weren't interacting well for me. I think derms should take this a little more seriously. I spoke to mine many times about how this could have started up, and she said that spiro could definitely not have caused this. And yet, there's many of us writing in this chat because we all experienced severe rosacea while on this medication.

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