Hello Shadylee,
I have read your post for a while now, and I have to tell you that you have made me feel better knowing I am not the only one feeling this way. There are many days I don't go to work and just hide in my house. Some days I felt like I just couldn't take it anymore and wanted to give up on life. If it were not for my wonderful husband, mother and son, I don't think I would be here today. In reading your post I have not seen anywhere that says you have went to an allergist, so I was wanting to know if you have had testing done? I had seen so many doctors and tried so many medications to no avail. I finally decided to go to an allergy specialist and have patch testing done, not that any of the 12 wonderful doctors I have seen recommended this, but found out this was my problem. I have to (or chose to) wear so much makeup up to hide all the huge cyst on my face I had no idea I was making my problems worse. I found out recently that I am allergic to so many things it is unreal. From my shampoo, conditioner, hair gel, hair spray, lotion, face cream, foundation, mascara, fingernail polish makes the eyelids swell and become flakey if you are allergic to its ingredients, and the list goes on and on. I am better, not completely, but just a few months ago found all of this out. I am beginning to look more normal misus the scars. I have been trying different face creams and foundations to see how they react and 2 weeks ago I tried an all natural product that contained aloe, I had no idea that if you are allergic to latex, which I just found out I am, then you are allergic to aloe and many other foods. I feel like I will never be normal, but at least now I am on the right tract, now it just trial and error. I know this may not be of any interest to you and maybe you have tried an allergist, but I had to throw this at you and see if I could help in anyway. I know how miserable and frustrating this is, be it hormonal or an allergy. I wish you well and everyone else that has posted with problems also. It makes me feel better to know that I'm not alone, not that I wish this on anyone. BTW I am 40. Thank you for posting and I hope to read you are acne free soon!
Still clear!! Yayyyyyyyyy!!!
In 2 days it will be 8 months on spiro. For anyone who is struggling after a few months of being on spiro, don't give up! It took me over 7 months! I might be talking too soon bc its only been 2 weeks of clear skin, but my skin hasn't been this clear in so long. My husband and I went to Atlantic City over the weekend to celebrate his birthday and it was the first time in soooo long that I went away without something growing on my face. It felt so great to be not freaking out over my skin. The big test will be in the next few days coming, I get my period in about a week. I always breakout badly right before my period and the worst time for me is right after my period, so we shall see. Even if I do breakout I feel like spiro is finally doing its work..If it does happen I will bump myself upto 150, but I am really hoping that's necessary.
Thank you so much Thovis for your very informative post, and for also sharing your story. It's so hard being "older" and dealing with this. I'm so happy to see you have a supportive family. I have no idea how I wld've gotten through this without my husband, he was always my rock and support. I think I might've finally found relief in spiro, I truly hope it sticks! Have you thought about going the hormonal direction? Its so frustrating trying to find the solution..
Well after my 7 month post I said hopefully the 8th month will be the magical month..I think it might be!
Well it's 8 months and 10 days and I'm still clear...I just got over my period and I had no problems. I can't believe it. I may be speaking too soon bc my period is just ending and one of my worst times is when its ending..At least I got thru the beginning part with no problems..
With that said I went to the dentist last Tuesday for the first time in so long. I'm such a freak abt my teeth but my skin was horrible for so long I kept cancelling. It felt good to be part of normalcy. While he was examining my teeth he noticed a mole on my arm that I have never noticed. He told me I shoud go get it checked out, sooner better than later. UGHHHH...Well I made an appointment and got in last Thursday. I had 5 moles removed and had cryotherapy on an unhealing rash on my forehead. 2 moles on my arm and one on stomach I had removed bc she said they were of concern. I had 2 moles on my face removed for cosmetic reasons. I had a growth in corner of my nose for 3 years now..nobody cld ever tell me what it was..They wld just say it was a growth. It was white so it didn't bother me hugely but hated that it was pretty noticeable. I also had a small white dot on nostril which didn't bother me at all.
My derm assured me I wld have no scarring. It was first thing I asked before she did it. I would have gotten one in corner of my nose done anyways, I always hated the bump and wld actually prefer a scar than the bump..its very close in corner of nose so it wldnt be that noticeable. But I wld NEVER have done the tiny bump on my nostril if I had known that it wld end up with the way its looking right now.
First of all she made it sound so easy shmeasy, like it was nothing. Shes like in 4 or 5 days you will look good. What a frkn joke!! There is a gouge on my nostril..the other spot in corner of nose is so lumpy and bumpy which is scaring me. I know the "roots" of the growth are still in there. I found out its possible for it to grow back, she never told me this. I'm on 4th day of healing and it looks no different from first day. I have to keep the spots covered in aquaphor, they look so disgusting. I don't see how the gouge in my nostril isn't going to heal without a scar, it looks like a chunk is missing. I would never have gotten it done, it was so small..I'm so pissed.
The spot I got cryotherapy on is BRIGHT red, its horrible. I'm not even sure she let it freeze enough. It was suppose to scab up and it never did, all it did was make it look so much worse. You can see the discoloration goes deep down in skin..who the f knows how long that will take to go away.
It totally sucks that I just started to feel normal again and BAM now this. I'm so mad bc the ones on my face were a choice I made. It seems like I always make the wrong decision. I might as well have cysts on my face bc these look so much worse. At least w cysts I know I can get them shot and they will heal ok. These spots I have no frkn idea what they will look like. I'm back into hiding in my house once again, its so depressing. I wake up in the morning with that horrible anxiety..totally sucks. Its only been 4 days but I wld love to see some kind of improvement, some kind of healing..
Its so bizarre bc the spots she removed bc she was concerned..I really haven't thought abt much. When I went there I was so freaked out that I might have cancer, it was all I could think of. Now all I think abt is these gouges in my face..It's so sad that everything on my face effects me so much.
I don't get the results back for like a week, which is pretty excruciating. Keeping my fingers crossed for good news and of course good healing...Thank goodness I'm not breaking out, I would have to be put in a mental institution!
Well today is my birthday, and I'm not breaking out..
But all I want to do is gouge my derm's nostril out. I cant tell you the anger I feel towards her. She assured me if she removed the spot it wouldn't scar. Such a frkn joke...I have a gouge that is not filling in. I wake every morning to look in the mirror and totally lose it. If I saw even if the tiniest glimmer that it wld fill in it wld thrill me. The cut itself is healing..its getting less red, but the gouge remains the same. I can't even explain what this is doing to me mentally. I still can't believe I did this myself. I am so pissed off she made it sound it was going to be a boo boo that wld heal in a matter of days..
I've been keeping it covered with aquaphor, the other one she took off is healing ok. This one she went too deep. I feel utter despair. At least with my cysts I knew they wld get better. Now what? I'll have to wait to get anything done on this and then spend tons of money trying to correct this..and for stuff that may not work??
Ok birthday rant over
Hi ya nmed..
I was very lucky and didn't really have any symptoms. Did you take your dose with food? I heard that can relieve stomach issue.
Once in awhile I wld get dizzy and feel a little faint, I would drink tons of water and I wld feel ok. Maybe you weren't keeping hydrated enough?
Maybe you can start off at a low dose and see how it goes, and work your dose up as your body gets used to it.
Sorry I wasn't too much of a help..I hope all goes well!
Spiro worked like a charm for me... though for the first year, I did lose probably 1/4 of the hair on my head (no bald spots, it just thinned out A LOT). It freaked me out, but I figured that hair can grow back, but acne scars are for good. So I kept on, and now the hair loss has stopped and it seems to be growing back. I think the key is a low dose, twice a day, always at the same time, keep healthy, and keep stress levels low. For me, I prefer clear, non painful skin to super full hair, though I do miss my super full hair. At one point, when I didn't know if the hair loss would stop, I did look into wigs. You could always shave your hair and wear a wig... I almost did, but my boyfriend made me wait, and it stopped... but if it starts to fall out again, that's my plan!!
Hi ya TruthSleuth,
As for my acne I'm doing very good. Had a couple blips before my period, but they were small and went away fast. I haven't had a cyst in a very long time. I am still on 125mg. I was thinking if I keep getting blips around my period I might try 150. I will see. How is your spiro experience going?
WishClean, Being a sufferer of acne for over 30 years, I too thought I would rather have clear skin over a full head of hair. I luckily didn't have to make that decision bc I barely had side effects while being on spiro. In my over 30 years of suffering w acne I have tried everything..Spiro is the only thing that has kept me consistently clear. I think your comment was a little harsh. Unfortunately meds do have side effects. It is one's personal choice of what they think is more important. It would be great if someone could find the perfect answer and not suffer any side effects at all, but sometimes that isn't meant to be. One has to decide if the side effect is worth the gain...
Well cant believe I have been on spiro for over 9 months..it has been a godsend. With that said I'm not really enjoying my clear skin at all. I had my 2 shave biopsies done on my face 5 1/2 weeks ago and they are still a mess. Its actually worse than having cysts, at least w my cysts I knew I could get a shot and they would get better. The shave biopsy sites are just a mess and look basically like 2 big red cysts. The redness has not improved at all, and the larger one is healing into a weird lumpy mess, it has been hell. I wake up every morning in tears. It totally freakin sucks to finally have manageable skin but have 2 big wounds on my face that don't get better.
I don't really know what my next step will be for these..I cant really get ipl or any lasers done bc they are so new. One derm recommended cortisone shot in big one saying it cld help w the swelling and redness, im a little scared , the skin is so fragile, frightened the whole area will sink in. I was going to try to wait it out another week before I saw derm again, but have a feeling i'm going to breakdown and go this week. I just cant take this anymore..i just want to see tiny bit of improvement..thats it..but doesn't seem to happen..
So if anybody has any experience w shave biopsies wld love for any kind of info...Thanks!
Hi! Sorry to hear you are going through all of that with the biopsies 
I really hope things will get much brighter for you soon and you can enjoy the clear skin. As for me, I had to drop down to 100 mg again because the higher dose messed with my period. I'm not breaking out like I used to anywhere on my back or chest but the only place left is my chin. I do use topical gels for that area and just waiting to see when that will all clear up too. I've been on at least 100 mg or more for 4 months. I know it can really take twice that long so I continue to wait. How is your progress this week?
Hi ya TS..Got a couple clogged pores near my laugh lines..This area has been my hot spot. The good thing is they are already going away after 2 days. Usually the suckers hang out for a long time.The first time I went to 125mg it messed w my period too..I only tried for abt a week and decided to go back down to 100 bc I hated spotting continually. A month or so later when I was still breaking out I decided to give 125mg a shot again. For some reason the 2nd time worked like a charm. No spotting, no side effects.I know how frustrating it can be to still be breaking out after 4 months. I remember in the beginning of taking spiro I cldnt wait til the 3 month mark. Then when I got to the 3 month mark and was still breaking out, I was so upset. Then came the 6 month mark, and I was still breaking out! It took me almost 8 months to find consistent clear skin.I figured it wasn't really hurting me, and I was getting no side effects so why not keep trying. I've read where it took a whole year to work for some women. I'm so glad I stuck with it.As for my biopsy sites, they still totally suck. I'm at my wit's end. I might as well have 2 gigantic cysts. They look so awful. One is healing into what looks like a big raised scar. I made appointment with derm on Monday. I'm praying he can do something. I truly can't take this anymore.I hope you see clearance on your chin soon, and please keep me updated on your progress!
Hi shadylee!
Just wondering how you are doing now?
My question is about tinnitus & spiro - did you find that Spiro made it worse at all? I have tinnitus but also have acne like you and im nervous about the combination..
any words of encouragement would be great
Thanks!
hey I actually noticed some tinnitus when I was on spiro I looked it up and apparently aldosterone (the salt/water hormone that spiro blocks has somehing to do with tinnitus). My tinnitus wasn't bad but it's just something I noticed
Hi JoJox,
I'm very happy to say that spiro hasn't effected my tinnitus. I was so nervous in the beginning. My tinnitus is moderate and at times I can get spikes which are brutal. Thank god the spikes go back down and my tinnitus is "livable". I have a tea kettle going off in my left ear 24/7. The good news is spiro didn't make it worse, thank god.
When I first started to take it of course any tiny change in my tinnitus freaked me out. Then I realized I was just being paranoid. I am so careful with my ears now. I also get very nervous if I need to take pain medication, or any medication actually. I get so scared my tinnitus will get worse. A few weeks ago I was prescribed antibiotics and had to switch the scrip 2 times bc when I reasearched the first 2 they had tinnitus as possible side effect.
Have you decided to try spiro? It's a hard decision I know, living with tinnitus isn't fun. Everyone told me give spiro a try and if it makes your tinnitus worse you can always stop. What they don't understand though is sometimes if a med does make it worse, it can stay that way..I decided to take the plunge though, and I'm very happy it didn't change my tinnitus. I'm very happy I decided to give it a try..
Please let me know what you decide to do!
Hi Leelowe!
I know its a hard decision to make. I remember being so scared. At first I was prescribed 50 mg a day. I was so nervous I decided to just do 25 a day just to see if my body had bad reaction. I think it was 2 weeks and I finally got brave enough to do 50, then I finally went to 100, I'm on 125mg now.
I think you should really just take the plunge. If you're really nervous maybe start off at small dose like I did.
Also, be patient! It took me almost 8 months to see consistent results. I still breakout every now and then but I haven't gotten one of my huge cysts in a very long time.
Please let me know if you decide to take it, Good luck!!
I saw my derm just this Tuesday and asked her about spiro. She got defensive and told me that I am wasting my money by paying her all this money since i am going to do my own internet research
Long story short she prescribed me topical Epiduo gel and wanted to pair thay with antibiotics but i rejected the AB (because of tinnitus) and she got all narky about that TOO!
she mentioned that in her opinion spiro would have worse side effects because it's a blood pressure medicine (apparently she only prescribes spiro to her patients with hair problems as In her opinion it doesn't really help with skin)
Maybe i need to find a new derm!!
Shady lee thanks for your response and I'm glad you sound positive and upbeat !!
Yeesh your derm sounds like a jerk! I swear it seems impossible to find a derm that truly cares, its so aggravating.
It's so hard dealing with tinnitus at times. Whenever I need some kind of medicine for something, I always have to research to see if it's ototoxic. I also find it annoying when I ask the Dr. if the medicine is ototoxic they'll look at me like I have 3 heads. The best is when they say "oh no, its not ototoxic" and I get home and research and it will be highly ototoxic..its like wth? Then I have to call Drs office and get new medicine and they act like i'm crazy. Its so annoying.
Perhaps try the epiduo and if it doesn't work, find a new derm! Your derm isn't sounding too helpful. Hope it works, Keep me posted!!
Hi Leelowe!
I know its a hard decision to make. I remember being so scared. At first I was prescribed 50 mg a day. I was so nervous I decided to just do 25 a day just to see if my body had bad reaction. I think it was 2 weeks and I finally got brave enough to do 50, then I finally went to 100, I'm on 125mg now.
I think you should really just take the plunge. If you're really nervous maybe start off at small dose like I did.
Also, be patient! It took me almost 8 months to see consistent results. I still breakout every now and then but I haven't gotten one of my huge cysts in a very long time.
Please let me know if you decide to take it, Good luck!!
Hi Hun. Just wanted to let you know I took your advice and I'm almost 2 weeks @ 50mg on spiro. Going through a pretty nasty pustule breakout (13+) inflamed pimples in addition to other blemishes and one cyst. It's bloody awful and I feel ugh. I'm going to ask my derm for an antibiotic (which goes against everything I believe in) which will hopefully at the very least quell the inflammation.
How have you been ? You've been quiet on the boards so hoping that means all is well.
Hi ya Leelowe..
Glad to hear you started spiro, but sad to hear you're going thru breakout. Hopefully it will clear up, and you will stay clear!
I'm doing pretty good but still get breakouts..nothing like I used to get tho..thank god!! Last week was the first time I got cortisone shot in 5 months. It really was my own fault. I messed with a pimple that I thought was def ready to pop...What a big mistake..I made it into a large nodule deep into skin..what a dope!
I'm doing 125mg a day but might try 150mg. I feel like I am so close to having consistently clear skin and the extra 25mg will get me there. I am sooo better than I was a year ago, but still hate I get breakouts..I'm greedy, I want to always have clear skin!!
Hope you're doing well and pls keep me updated!
4 hours ago, getschwifty said:I've been prescribed 100mg spironolactone immediately.
I'm not really what to feel since it's only been 9 days but I've been peeing more frequently, libido is pretty low and I feel weak easily.
I wld give it a chance. Sometimes I wld get bouts of dizziness , but it wld go away. I've been on it for 14 months now and basically don't have any side effects. It has been a rollercoaster ride for sure. Right now I'm in a good phase, I really hope it stays that way!! I'm on 150mg now...I started at 25mg.
Hope you see results soon!
13 minutes ago, shadylee said:I wld give it a chance. Sometimes I wld get bouts of dizziness , but it wld go away. I've been on it for 14 months now and basically don't have any side effects. It has been a rollercoaster ride for sure. Right now I'm in a good phase, I really hope it stays that way!! I'm on 150mg now...I started at 25mg.
Hope you see results soon!
How's your libido going right now?
I'm really concerned that that would affect me because I have a boyfriend.