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shadylee

Spiro...my Last Hope

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Still clearrrrrrrrrrr!!! Yahooooeyyy!!

Leelowe ty always for the kind words..

Kimber, I completely understand how you feel. I didn't start to get cystic acne til my early 40s, and then it went completely haywire early this year. It devastated me. I stayed home basically the whole summer, I cancelled plans all the time. I basically cried everyday. Couple of years ago I tried Accutane, but unfortunately it wreaked havoc on my eyes, I quit after a month. I was so disappointed, I really do feel Accutane is a miracle drug. I finally went on spiro, my derm believes even if I finished my course of Accutane my acne probably would've come back since its hormonal, but who knows. I don't love the idea of being on a drug that after I stop it the acne will come back, its pretty scary. But right now I am happily taking it. I'm 47 so maybe in a few years after menopause i'll be able to stop. Im wishing you all the luck with Accutane, I'll definitely be looking for your progress!

fvckacne..my diet is average..i don't eat fantastic, but I don't eat like total crap either. I do avoid dairy. The only supplements I take are vit d3 and a prescription vitamin for acne called Nicazel.

I have noticed last few days my breasts are definitely tender, hoping that will subside. I just cant believe tomorrow will be 3 weeks since I got cortisone shots, and I cant believe I am acne free...feels absolutely WONDERFUL!!!!!!!!

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11 weeks 1 day..

Over the weekend got 2 very small pimples, that since have gone away. Late Sunday night started to form a biggish pimple on left side of my chin..my hot spot. It amazes me how one area can form so many lumps and bumps. It did come to a head, and is healing now, but was a little too big for my taste. Its starting to heal, but is still a bump and is red. I am grateful it wasn't a cyst. I also have a tiny clogged pore in same area, for some reason I felt the need to try to tackle it, stupid idea. I stopped myself right before I made a total mess. I think I start messing with my skin when I start feeling the anxiety.

My skin is definitely so much improved. My problem is every little lump gives me such anxiety. I haven't had a cyst in 3 1/2 weeks, but yet I still have the same anxiety. I get my period in 4 days so I'm thinking that's why i'm getting these small breakouts. I wish I could get the anxiety under control..My skin is the best it has been in so long, but yet I cant seem to really enjoy it. I always have this fear that all the cysts will come back in full force.

I still love spiro, it has greatly improved my skin.

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12 weeks..

Well my skin was doing great until last night. Felt a lump growing high up in left chin area (of course) kind of near corner of mouth area..I tried not to panic bc I have been so lucky lately..any lumps have just been regular pimples that have gone away in a couple of days. Unfortunately I woke up this morning and its a small cyst. Its way below surface and it hurts. Its been getting bigger throughout the day and I'm totally bummed. This is the first cyst I've gotten in over 4 weeks, and I'm kind of freaked out. Terrified that cysts will come back in full force again.

I'm really hoping it came along bc i'm at the end of my period. I also drank and ate a lot over the holiday. I'm going to go get it shot tomorrow, i'm hoping it doesn't get too red by then, my red marks have really calmed down and don't want to have to deal with another one.

Now that my skin is clearing, I am noticing some scarring on the chin. I have one that kind of bothers me. Just not loving my skin right now.

I also had the most painful period I've had in months. I have a very large fibroid and gyno says only way to remove it is partial hysterectomy. I just have no desire to do that, I've read up so much about it and it truly messes with your hormones. Obviously that's the last thing I want to do. When I was taking DIM it greatly reduced my cramps, it was pretty amazing. My last 3 cycles I haven't been taking DIM and each one has gotten progressively worse in pain. I spent 2 mornings in bed for hours in utter pain. I relented and took 2 Advil, they did nothing, took a 3rd and I got so dizzy, and had shortness of breath. It terrified me. I know you're not suppose to take while on spiro, but I was so desperate. I'm really nervous about what next month will bring. I've been trying to research if I can take DIM while on spiro but haven't found much. I also think DIM made me break out, but it was amazing for my cramps..Dont know what to do..If anybody has any info about spiro and DIM, would truly appreciate if you would share!

When I started to take spiro, I remember thinking I wonder if I will have clear skin by Thanksgiving. Well am happy to say I did have clear skin for Thanksgiving, I'm happy for that...I'm just praying this cyst is just a little blip and I get on track again..

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Ughhh......

Stupid cyst tuned into a MONSTER! I also have a large pimple growing in the crease of my smile line, right moustache area. Not sure if its a cyst or not, but its on biggish side, I'm not waiting to find out. I have appointment at 12:30 for shots.

I read in someones log, where she was breaking out, and she wrote.."I feel gutted"...That really hit home. Its exactly how I feel right now..gutted.

Its so terrifying to me that I got such a monster after 12 weeks, especially since I was clearing. The thing is huge, hard as a rock, and deep. I feel like all the progress I made is down the tubes. I can't tell you how scared I am that the cysts will return, that spiro actually wont work after all. As you can see I'm a total pessimist...Its just that I was doing so well and it freaks me out that I got such a large one..sighhhh.

Of course the anxiety level is back to sky high, woke up this morning and didn't want to get out of bed. Truly hoping this was just a blip...

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Hey Shadylee,

Spiro is really up and down in those beginning months. Especially when outside factors (stress, diet, sleep, period, etc.) come into play. It seems like you are doing better though! I went back through and read your posts again, and you sound so much more optimistic (even if you are still playing the waiting game), it is good to hear that you are starting to feel like the old you. That makes me happy! Because you deserve to be happy, and I think we all know here all too well just how much acne affects that. Try to keep strong and your chin up! Patience is the hardest part of this journey. I am confident this will help you. I'm here for you! Things will get better.

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Well got my shots yesterday...I can't even tell you how big the cyst got..TERRIBLE...Even the derm was like Wow, that is quite big. This is probably in my top 3 biggest cyst category. Very worrisome to me :(.

After I got it shot, the whole area swelled up. My cysts usually get bigger after I get them shot for a couple of hours, but this was insane. I was freaking. It was also weeping clear liquid, I got in total panic thinking the cortisone was coming out of it. Total meltdown. After a few hours the major swelling went down. Last night did my regimen and made myself not look in mirror or touch the cyst. This morning the major swelling is down, the skin is a little less taut. I still have a big ass lima bean in my face though and a penny sized red spot. UGGHHHHHHH!

I'm hoping that it continues to get smaller and smaller, I'm gonna go crazy if it stays this size. Trying so hard not to feel it every second.

What scares me so much is the fact that it was so big. It really is one of the biggest ones I ever got. It started off so small and it just kept growing and growing. Just so bewildered that after almost 3 months that something this large would arise :(

I'm still very happy with spiro, I really do think its helping. At least nothing new is popping up..yayyy!

Kirks, I'm soooo happy that you're doing well and ty always for the support! Much appreciated!!

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Well have to say, I'm pretty miserable, had myself a good cry.

The cyst is still big as hell, and I think I have a new one growing. My skin just looks blech to me, the texture looks so bad, it looks so uneven to me.

I'm so low right now, I was experiencing the best skin I've had in so long and it all went to hell. I feel like I did 3 months ago when I started spiro, kind of hopeless. Back to thinking that maybe spiro wont work for me. Its just so heartbreaking to have that feeling of hope, and then BAM its just taken away. I know I'm whining, but jeez after 30 years of this, i'm just sick of it.

Well 12 weeks 3 days..side effects are pretty minimal, although I do think my hair is starting to shed a lot more...

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3 months!

The cyst from hell is almost completely gone, and the redness is actually going pretty fast, yayyyy! The other thing growing just ended up being a regular pimple, which is almost gone. I haven't gotten anything new...skin is looking good. Hope is coming back :). I keep reminding myself I am doing sooo much better than I was. I was breaking out every single day a couple of months ago. Feels so good not to have anything growing on my face!

I started to use tazorac again, I had stopped a couple of months ago. I'm glad I started it again, I like the way it makes my skin feel.

Not sure about the hair thing, but I do think I am shedding more. Not enough to freak me out yet though. Also last couple of days have felt realllly bloated, I hope it goes away, its uncomfortable.

So happy to say my skin is back on track and hopefully it will stay that way!

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Well happy to say, skin is doing very good. I got a small cyst a couple of days ago that is already disappearing. Feeling very happy!

I went to the gyno today bc along with the bloatiness I was getting cramps. Also my cramps that went with my last period were unbearable. I have a fibroid the size of a grapefruit. I've had it for awhile now but chose not to do anything w it bc besides the painful cramps Ive had no other symptoms. Last time I went to gyno she told me I wld probably end up doing something with it bc she thought it wld start to bother me..it has really tilted my cervix , and is pressing up against bladder. Its hard to believe I have a grapefruit inside of me and not really know it.

Well she thinks that's why Im having discomfort now. I had endometrial biopsy today, and will get mri next week. Since its so large I don't have many options to get rid of it. My only viable choice really is partial hysterectomy. I'm soooo nervous about f'ing with my hormones now. I'm finally getting some relief with my skin, and don't want to ruin it. She says she can keep my ovaries which then nothing should alter my hormones, and that I can stay on spiro. Well of course I came home and googled hysterectomy not having ovaries removed, skin issues...and of course tons of stuff came up that women say even though they kept their ovaries they still had major issues with hormones and skin issues..sighhh!

So now im not sure what to do. I'm just not sure if I can put up with this bloating uncomfy feeling and the menstrual cramps much longer. I'm going to try to just take one step at a time and really think about my decision, what will be best.

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Hi shadylee, I haven’t read through your entire topic, but I wanted to see how you were doing? Is spiro finally working for you? I read a post you made on cortisone injections where you said that your acne is concentrated on your left cheek. Is this still true? If so, that doesn’t follow the usual hormonal pattern. Perhaps you have a localized infection and antibiotics would clear it up?

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Hi ya Brenmc,

No, I don't breakout on my cheeks anymore..its all concentrated now on my chin and around my mouth. Even though I am still breaking out, its not nearly like it used to be. I do believe spiro is helping. I'm a little over 3 months, But it took over a month I think to work myself upto 100 mg. I'm hoping as I get more time under my belt it will just keep getting better and better.

Update..

I did have my check up today. Got my blood work back and thank god potassium was in range. It went up a tiny bit from last blood test which is a little frustrating bc I've been a nut about my potassium intake. My derm gave me another 3 month scrip, and in 3 months will have to do bloodwork again. Kind of annoying bc I see where lots of people don't have to do bloodwork, but that's my derm's policy. I guess its good to be safe, but jeez i'm just going to be so stressed abt potassium intake etc. She does the whole metabolic panel so everything has to come back good..i guess better safe than sorry.

my face has been ok, just getting regular pimples that seem to go away in a few days. No new cysts since the cyst from HELL..butttt..that cyst started to refill a cpl days ago :(..not nearly as big..and it felt soft and squishy, wasn't hard lump..and thank god no redness. Of course I got it shot again today, hopefully it will kill the f'er for good! For the most part i'm feeling good about my skin, altho I do wish the breakouts wld stop, but glad no cysts.

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Hi Shadylee, I was on spiro 50mgs for 6 months and was soooo clear for 3 months then started breaking out around my periods again so my derm bumped it up to 75mgs, well after 2 months I was getting those horrible cysts again so now im on 100mgs with Minocycline to try and calm down these break outs....im beyond frustrated at this point. I feel your pain on the break outs! when will this hell end !!!

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Hi Valerie,

So sorry to hear you're breaking out again, so frustrating! I was clear for almost a month, I got so excited. Then just abt 3 weeks ago I got the biggest cyst I think I've ever gotten..just out of the blue. Its like why would that happen? It started to refill few days ago but I got it shot yesterday. I guess I should be grateful that that's the only cyst I've gotten in 7 weeks, but jeez was so frkn huge!!

My face has been ok, but now I seem to be getting small pimples just about everyday. Its so weird. Some of them go away super fast, but some of them hang out for a few days. I have never been a person that would have lots of little acne. Its like I cant win..The cysts have seem to be subsiding but now I have to deal with regular acne..Its like my skin is saying no way are you going to get off easy.

Right now my skin is looking pretty good, some small bumps that you cant see but I can feel them. I have to wait to see what they decide to do. Hopefully now that the cysts are subsiding, the little ones wont be far behind.

I really hope your dose increase and antibiotic starts to kick in for you..Its such a frustrating ride! We will get there though!

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16 weeks and my skin is a wreck..

Was getting by with just some small pimples, they were annoying, but manageable. This weekend I got bombarded. I have 3 small cysts and array of small pimples, I look a mess :(. I went and got shots today, so hopefully face will calm down.

I actually made another appointment for Friday bc I think my cyst from hell which I got shot twice already is refilling. It wasn't big enough to shoot today but I can feel the little nugget. Very annoying, and its giving me such anxiety. I can also feel another tiny nugget growing. I cant stand this. I was hoping by now I'd be experiencing sustained clarity.

The derm I love to use for my shots is closing from Wednesday to next Monday. On Friday I'll have to use the derm I hate giving me shots..his track record sucks but i'm hoping he gets it right.

Next Monday my hubby and I are going to Charleston for a mini vacation..I'm so hoping I don't have a planet growing on my face. There is nothing worse than going on vacation with horrible skin.

On a positive note, I hardly had any cramps during my period. Its a miracle, the last few months have been utter hell..Last month being the worst..I couldn't get out of bed it was so painful. I'm on my last day and no cramps..for that i'm extremely grateful bc I did not want to go thru that hell again.

Overall feeling quite low. My anxiety is thru the roof. The derms office was so crowded today and I was so embarrassed by the way I looked. Praying spiro kicks in soon...

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How are you doing? Any updates? I hope that you are finally seeing positive results and giving spiro a fair chance by sticking it out. I had an IB and another at about 5 months, but as time went on my skin got better and better. I also had the added side effect of weight loss! No other side effects whatsoever. I am on a high dose, too, 50mg and even 100mg a day was not enough for me to see results. So hopefully your doctor will work with you in finding the right dose. I know I had to really advocate for myself. Hope you're doing well!

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4 months 2 days..

Well had to go get shots that Friday. I asked him for prednisone bc my hubby and I went to Charleston on Monday, we came back last night. I hate being on vacation breaking out. I had to start taking the prednisone Monday night bc I had doozies forming :(. I had to take it til yesterday morning, but I only took half the dosing. I love prednisone while taking it, but I tend to flare up really bad afterwards so I wanted to take as little as possible. This morning I woke with a pink tinged face which I know is from the prednisone. I also woke up to a large spot near corner of my mouth which I know is going to be quite big. I've basically been fighting it all week, even the prednisone couldn't kill it. Now I'm just going to let it do its thing, and if I have to i'll go get it shot on Monday. I also have a smaller one near my nose right cheek area.

The past week would have been horrible if it wasn't for the prednisone, it definitely stopped at least 3 huge spots. It appears this week probably wont be better. This is getting so frustrating. After each round of shots I get so hopeful that they will be the last, that spiro is finally going to kick in. Unfortunately that hasn't happened yet. I'm getting scared that its not going to work. Keeping my fingers crossed that at the 6 month mark I will be seeing improvement. If not I think I might ask for dosage increase. I'm just so sick of this.

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4 months 6 days...

I'm actually doing pretty good, god I hope I don't jinx myself. Everything is calming down except for that pesky spot near corner of my mouth. I decided not to get it shot bc it isn't huge or that red. If I had other stuff that looked bad I would go, but it seems crazy to go just for this one spot. Its just annoying bc if it wasn't there i'd be really happy with my skin.

This is the best my skin has looked in a long time. I'm actually liking the texture of it. This is the best I felt in a long time. Keeping my fingers crossed that spiro is finally kicking in. Next week is when my skin usually goes haywire (week before my period) so we'll see what happens!

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Shadylee! I was so happy to read that you are feeling good about your skin! I hope it stays that way. I'm on my period now, and I don't know if that is it or what but my skin is UGH. It is frustrating, the ups and downs. Here is to more ups!!

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hey kirks..sorry to hear your skin is ugh :(...mine is so so.

4 months 19 days..

My skin was doing pretty good..just getting smaller pimples that wld go away in matter of days. Got my period on Friday. Was doing pretty good up until my period which was great bc that's usually a bad time for me. Also right after my period is a bad time..and sure enough i'm not doing the greatest right now. The cyst I've gotten shot 3 times I think is regrowing..its happening so slowly but I can feel it. It cant be seen right now but each day it grows a tiny bit..its pure torture. I also have a new small cyst that I thought was going to be a small pimple but grew over night. They both aren't horrible right now, but I know in a couple of days they are going to be a problem for me.

I guess I shld be grateful that's the only cysts I have. I think i'm just bummed bc I have been breaking out w small pimples...breaking out after almost 5 months of being on spiro is a little discouraging. I'm way better than when I started, its just annoying that I have no consistency. Now I tell myself 6 months will be the month...im really hoping it is!

Kirks, Hoping 2015 gets better and better for us!

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In 2 days I will be on spiro for 5 months...wow can't believe it..

I am verrrry happy to say I haven't broken out for 1 week today. Nothing, not even small ones. I can't believe it..I also know posting it can very well jinx me. I am just praying I have finally hit the turning point.

Its so nice to wake up in the morning, look in the mirror, and not find anything. The big test will be in a week or so, the dreaded week before my period. The week before and couple of days after my period are always the worst. I'm very curious to see what happens.

Now for the "bad" news...The reoccurring cyst I talked about in my last post is still with me. Its a cyst that was shot 3 times and started to come back. Its actually 2 lumps almost right on top of eachother. I'm happy to say they haven't gotten bigger, they aren't red. You cant even see them, but I can feel them. Its just so annoying to have clear skin, but yet feel these 2 lumps in my skin. They feel like 2 bb's embedded in my skin. I am very grateful they aren't noticeable, but they do make me anxious.

I'm just not sure how I want to deal with them. Having been shot 3 times already, I'm nervous going another time. I don't want atrophy. I also really don't want to take antibiotics bc of my tinnitus. I'm thinking I will just wait it out another month or so. Then maybe go for shots. The last time I got shots was 5 weeks ago, and that feels great!!

So keeping my fingers crossed that I am one of the people that it took 5 months for spiro to kick in, and after that my skin stayed consistently clear!

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The official 5 month mark!!

Wow can't believe it! I also cant believe I'm still acne free!! 9 days of nothing new, HOORAY, and over 5 weeks of no shots, DOUBLE HOORAY!

I still have the stupid 2 bb things, they haven't budged, but they also haven't gotten bigger. They are just soooo frustrating though, I feel like they can pop out any second. Here I have clear skin and im not 100% enjoying it bc I feel these lumps that aren't going anywhere.

I'm still unsure of how I want to get rid of them..If I hadn't had that area shot 3 times already I wld be running to the derm for shots, and just be done with it. Ughhhh. The end of next week is usually when I start to break out so I figure I will at least wait til then to fig something out. I usually always go for shots then so I can kill 2 birds with one stone. Ask my derm on what she thinks I should do. Will be so great to have them gone!

I still cant believe my skin is clear, I wake every morning thinking I will have something. Its such a great feeling not to have new things happening, I'm having hard time believing, but verrrry happy!

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The good news is This is a miracle drug.

The bad news is I cant take it anymore.

It cleared my skin almost completely. I was in love with this medication. It cured my self-consciences and my cystic acne disappeared. It is LITERALLY the only problem I've ever had solved by a doctor.

With all that said.....It gave me very high potassium. I started getting short of breath and very scary heart pain.

To my knowledge, I have no kidney disease. I was told this drug is safe and this side effect is extremely rare...but if your life sucks like my life sucks, you can be one of those LUCKY people who get this side effect.

Now I am bitter and pissed off because this drug REALLY WORKED for me....

But it literally is killing me.

Good luck if you are taking it. Get your blood checked even if your derm tells you "high potassium never happens" mine told me she NEVER had patient have high potassium. But TADA I did.

I say if you have hormonal acne it is worth a try but please make sure you are getting your blood checked up. Even if the dr says it isn't necessary trust me it is.

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