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Just started Spiro, terrified of side effects!

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(@lilly1991)

Posted : 04/15/2016 2:17 pm

Hi guys,

I have been suffering from awful cystic acne since I stopped taking birth control back in August. After no topical medications have helped and I have started birth control again, my derm prescribed spiro. I just started 3 days ago with 50mg per day. My derm didn't mention any side effects and I had only read good things online so far about it, but after waking up with an painful cyst this morning I started more research online and uncovered tons of stories about awful side effects of spiro! I am so terrified now and am contemplating stopping taking it and maybe even doing Accutane instead. I have read numerous stories about uncontrollable weight gain and cellulite that doesn't go away after stopping spiro. I've also read about muscle loss and poor workout performance - I love working out and am just starting to see some definition and don't want to lose it. Are these side effects really common or is it just more people are writing about their negative experience online? Any feeback is appreciated because I'm freaking out and am not sure if I should stop taking it.

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(@snarkygirl)

Posted : 04/15/2016 3:56 pm

Hi, I've done a lot of research too and I will tell you a few things.
Spiro usually causes 10 lbs or less of weight gain, mostly in your boobs and butt. It can cause headaches fatigue and muscle cramps and occasionally high potassium levels. Most times if you get that, its in the first few months and your doctor will check for this. Id sugget starting at a low dose like 25 mg and slowly increasing it over several months. There are other listed effects but a lot of people take it for blood pressure and its considered relatively safe. Its good that you're thinking of this though, being informed is good!
Accutane. Im just gonna give a big HELL NO! I've read the horrific side effects ( everything from hair loss to night blindness to joint pain to having your colon removed to your lips literally flaking off). It was developed as a cancer drug... Which are very toxic. It is known to cause birth defects ( you must sign a pledge that you will take birth control ). Not to mention the very real possibility of depression and suicide. I have those tendencies in my family history so I'm not willing to go there. My boyfriend took it as a teen and had depression and near suicide attempt at the time. I know two others who had bad complications. One has severe IBS and still has acne.Perhaps most eye opening is, Accutane only is effective at best for about 2 years, if that. Hormonal acne is likely to come back. Theres people on here who have taken 2,3,4 courses of it and are STILL dealing with acne!
So, id say at the very least, give spiro a chance and call your doctor if you have any side effects or worries. Ask i you can start slowly and up the dose gradually.
I'm not a doctor, I just have been looking into these options for a while. Good luck!

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(@mh14)

Posted : 04/15/2016 5:32 pm

Hi Lilly:
I was in your same boat last fall so, if it can help, I can tell you my experience on Spiro. I essentially did was snarkygirl above suggested - started at 25mg/day (because I, like you, was terrified, but more about having a horrific IB than other side effects). My skin troubles were not so much cystic, but that my oil glands were overproducing, the follicles were clogging, the skin was not being properly exfoliated, and I'd have awful closed comedones that would need to be manually extracted.
Even a low dose of 25mg was enough to kick off the purging. After a couple months, I went to 50mg, then 75, and finally to my current dosage of 100mg/day split into 2 doses. Each time I upped the dose, I would purge a little. Nothing crazy (though, being obsessed with my skin, it was awful in my eyes), but it was obvious the junk lying beneath was being dried out and pushed up. My oil production just plummeted. THAT was amazing.
Currently, I am nearly completely clear and find it miraculous. The PIH has nearly all faded and I continue to treat it successfully, thanks mostly to what I've learned on this forum.
As for side effects, I'm sure everyone responds differently. I can tell you that I did not gain a pound in 6 months, rather I dropped weight (which I've read isn't uncommon because spiro is a diuretic). Unfortunately, I was small to begin with and spiro + stress dropped me below 100 lbs which I found unhealthy looking. I would *love* to have gained back the cup size I lost after having 4 kids. I have not noticed muscle loss, fatigue, insomnia, raging thirst, breast tenderness, or any wackiness with my period. Of course, this doesn't mean some women do not experience all of the above - I was desperate for a skin solution and was willing to take the risk. I get blood work done to check potassium levels and everything has been normal.
This would be my one major note of caution if you stay on spiro and find it to be working: you can't take it if you want to become pregnant. I don't know your age or wish for a family but I couldn't have taken it in my 20s even if I had known about it because I was having kids up until age 31. I am now 35 and done having children so I feel comfortable being on spiro long term.
Best of luck to you! Keep us updated. There are a lot of kind, helpful people on here to answer questions.

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(@shadylee)

Posted : 04/15/2016 6:16 pm

Hi Lilly,
I've been on spiro for over a year 7 months. Like you I was terrified to take it. Whenever I try something I tend to get the worst side effects. Spiro was my last resort, I was suffering cystic acne that wldn't stop coming. I started at 25 for cpl of weeks then went to 50, then 100 and now I'm upto 125.

It took me abt 8 months to start getting consistent results..I have to say there was a lot of ups and downs and times I wanted to quit bc I didnt think it wld work for me. I kept on it bc I had nothing else to try. I am so happy I stayed on it . I haven't had a cyst in months. I do still get small breakouts but they go away in like a day. I'm very happy with spiro.

I really have had no side effects on spiro..there was a cpl of times i felt dizzy, I think due to dehydration..(important to drink water)...And a few times my period got all wacky, but that can be due to my age too, I'm 48. I actually lost weight on spiro when i first went on it, and now I'm my normal weight..no weight gain.

Everybody is different..Try it and if you get bad side effects you can always stop..

Good luck and if you have any questions, don't hesitate to ask..

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MemberMember
264
(@snarkygirl)

Posted : 04/18/2016 7:21 pm

On 4/15/2016 at 6:32 PM, MH14 said:

Hi Lilly:
I was in your same boat last fall so, if it can help, I can tell you my experience on Spiro. I essentially did was snarkygirl above suggested - started at 25mg/day (because I, like you, was terrified, but more about having a horrific IB than other side effects). My skin troubles were not so much cystic, but that my oil glands were overproducing, the follicles were clogging, the skin was not being properly exfoliated, and I'd have awful closed comedones that would need to be manually extracted.
Even a low dose of 25mg was enough to kick off the purging. After a couple months, I went to 50mg, then 75, and finally to my current dosage of 100mg/day split into 2 doses. Each time I upped the dose, I would purge a little. Nothing crazy (though, being obsessed with my skin, it was awful in my eyes), but it was obvious the junk lying beneath was being dried out and pushed up. My oil production just plummeted. THAT was amazing.
Currently, I am nearly completely clear and find it miraculous. The PIH has nearly all faded and I continue to treat it successfully, thanks mostly to what I've learned on this forum.
As for side effects, I'm sure everyone responds differently. I can tell you that I did not gain a pound in 6 months, rather I dropped weight (which I've read isn't uncommon because spiro is a diuretic). Unfortunately, I was small to begin with and spiro + stress dropped me below 100 lbs which I found unhealthy looking. I would *love* to have gained back the cup size I lost after having 4 kids. I have not noticed muscle loss, fatigue, insomnia, raging thirst, breast tenderness, or any wackiness with my period. Of course, this doesn't mean some women do not experience all of the above - I was desperate for a skin solution and was willing to take the risk. I get blood work done to check potassium levels and everything has been normal.
This would be my one major note of caution if you stay on spiro and find it to be working: you can't take it if you want to become pregnant. I don't know your age or wish for a family but I couldn't have taken it in my 20s even if I had known about it because I was having kids up until age 31. I am now 35 and done having children so I feel comfortable being on spiro long term.
Best of luck to you! Keep us updated. There are a lot of kind, helpful people on here to answer questions.

cool! how long can one be on spiro? My birth control yaz has a similar type of drug to spiro to a lesser degree but even the low dose seems to work well for me. Ive only been back on it less than 2 weeks and already my skin is much better.

On 4/15/2016 at 7:16 PM, shadylee said:

Hi Lilly,
I've been on spiro for over a year 7 months. Like you I was terrified to take it. Whenever I try something I tend to get the worst side effects. Spiro was my last resort, I was suffering cystic acne that wldn't stop coming. I started at 25 for cpl of weeks then went to 50, then 100 and now I'm upto 125.

It took me abt 8 months to start getting consistent results..I have to say there was a lot of ups and downs and times I wanted to quit bc I didnt think it wld work for me. I kept on it bc I had nothing else to try. I am so happy I stayed on it . I haven't had a cyst in months. I do still get small breakouts but they go away in like a day. I'm very happy with spiro.

I really have had no side effects on spiro..there was a cpl of times i felt dizzy, I think due to dehydration..(important to drink water)...And a few times my period got all wacky, but that can be due to my age too, I'm 48. I actually lost weight on spiro when i first went on it, and now I'm my normal weight..no weight gain.

Everybody is different..Try it and if you get bad side effects you can always stop..

Good luck and if you have any questions, don't hesitate to ask..

hi mind if i ask something? I actually have borderline blood pressure these days so maybe spiro would not give me the low blood pressure symptoms. Was your blood pressure normal or low or high begpte starting spiro?

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MemberMember
61
(@shadylee)

Posted : 04/18/2016 7:28 pm

I had normal blood pressure when I started and still have normal blood pressure...My Dr. also requires to get blood tests every 6 months...All that has come back normal too.

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4
(@mh14)

Posted : 04/18/2016 8:18 pm

Lilly: I've had 2 different doctors prescribe me spiro now and neither one mentioned how long I might be on it for. From reading this forum I figured that some women can be on the medication for many years, which is what I hope to do. It seems that lots of people report that if they stopped the medication, their skin woes came back fairly quickly.

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(@likelytempo)

Posted : 04/20/2016 6:14 am

Hi there. I started Spiro in March of 2015...50mg. I went to 75 in June and just increased to 100 this week. I was on minocyclin when I first started and increased to 50 and I didn't have a flare. I've been off antibiotics since September so I'm praying there is no significant purging this time either.

My skin was pretty good on 75, minus the mid cycle breakout some months that caused 4-5 pimples...not cysts. Upping because I'm hoping to stop that too.
Good luck!

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0
(@lilly1991)

Posted : 04/20/2016 2:09 pm

Thank you all so much for responding, it's put my mind at ease because I was really horrified of all the negative side effects I read online. I started my period the day after posting so I think my pms may have made a bit more pessimistic than usual! lol

I started taking minocycline with my spiro and my face is already significantly clearer - like I can actually leave the house without a full face of makeup clear! My dr started me out on 50mg a day and I haven't noticed any negative side effects. I am thirstier than usual, but I really need to drink more water anyway. I will keep an eye on out for any weight gain or other negative side effects, but it seems like it is working just fine.

Again, i really appreciate you telling me your experience! I feel a lot better about taking Spiro now.

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MemberMember
264
(@snarkygirl)

Posted : 04/22/2016 2:08 pm

On 4/20/2016 at 3:09 PM, Lilly1991 said:

Thank you all so much for responding, it's put my mind at ease because I was really horrified of all the negative side effects I read online. I started my period the day after posting so I think my pms may have made a bit more pessimistic than usual! lol

I started taking minocycline with my spiro and my face is already significantly clearer - like I can actually leave the house without a full face of makeup clear! My dr started me out on 50mg a day and I haven't noticed any negative side effects. I am thirstier than usual, but I really need to drink more water anyway. I will keep an eye on out for any weight gain or other negative side effects, but it seems like it is working just fine.

Again, i really appreciate you telling me your experience! I feel a lot better about taking Spiro now.

cool! Were hoping it goes well

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