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Spiro...my Last Hope

 
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61
(@shadylee)

Posted : 09/08/2014 9:06 am

Hi All,

My name is Lisa and I'm 47 years old. I have been suffering from acne for over 30 years. I was able to deal with it pretty well through the years bc I wld have weeks of clear skin, then get a breakout. I would get over the breakout and my skin wld heal well. That all changed about 5 years ago. That's when I started to develop cystic acne, I never had a cyst till my early 40s.

I was dealing "ok" even with the cysts. I would get 1 or 2 tops at a time, I would go get cortisone shots and I wld be clear for awhile. It was a tiring process, but I was able to deal with it mostly, although I did have some very low points. The beginning of this year I was actually doing great, I had like 3 months of clear skin. I foolishly thought I was finally out of the woods, what a joke!

The last 3 months have been HELL...I now can get upto 4 to 5 cysts at a time, and I breakout with something new everyday. Not always cysts, but there is always a new bump of some kind. I never had such chronic acne in my life. I cry just about everyday and I am filled with such unbelievable anxiety. It really has made me a shell of who I was.

I've had my hormones checked throughout the years, and they always have come back in normal ranges. A little over a month ago asked the derm to get bloodwork again. When I got the results I went to an endo. The endo said in all her years she has never seen a level so high in a woman. She wanted to retest bc she was thinking it cld be a mistake with the lab. I was also taking DIM but had stopped it a cpl of weeks before I saw the endo. She asked me to wait a cpl of weeks before retesting bc she wanted the DIM out of my system.

With that said, got retested and my hormones came back in normal ranges. I was kind of bummed out actually, I thought for sure it has to be hormones..I also have facial hair which totally sucks. I talked her into giving a scrip for spiro anyways, bc I have read your hormones can be at normal levels but still have sensitivity to androgens. She prescribed me 25mg twice a day.

During all this was going to derm to get cortisone shots, I talked to him abt spiro too. He really wldnt give me straight answer if he thought it was a good idea or not, which was annoying. He said it does do wonders for women that do have hormonal acne, but my levels are normal. I actually have another appointment with him on Thursday to get more shots and he wants to discuss with me the side effects of spiro.

I was waiting to see him to start taking spiro, just to make sure I was making right decision. It seems whatever medications I take I always get all the bad side effects. I am absolutely terrified of hair loss, that is my biggest fear. I still get regular periods and they are like clockwork, so i'm scared its going to mess with that too.

Yesterday I had a great day..everything was healing and I was actually feeling normal, I thought it was going to be the first day in long time where nothing was going to grow, I was feeling ok about waiting till Thursday before I took my first pill. Fast forward to late last night..went to scratch an itch on my face..and tadaaa...2 new spots..UGHHHH

So this morning took my first pill, lol. I think first week i'm going to just do 25mg a day just to see how my body reacts to it.

Sorry so longwinded, just wanted to get it all out...its all so frustrating!

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144
(@tracy521)

Posted : 09/08/2014 9:17 am

good luck to you! i think the spiro will work so well for you but i think you need at least 100mg a day for it to really work. i tried everything myself and had cystic acne on and off for years and am 37 now and spiro is the only thing that has 100% worked for me over the long term. this dec will be 2 years on it and it has really saved my life. i no longer have to worry about what will be popping on my face everyday and my anxiety levels are slowly going down even though i am still trying to fix my scarring. i've had no side effects at all so i think you will be fine. i was so nervous too and put it off for a few years but everything has been fine with me. also just to note a lot of people have had normal hormone levels and still have hormonal acne and take spiro. good luck to you!
i would get on a good quality antibiotic though when you start just to avoid any bad breakouts.

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61
(@shadylee)

Posted : 09/08/2014 10:03 am

Thanks for the reply Tracy..I love hearing success stories, especially ones with no bad side effects, lol. Makes me feel hopeful.

I unfortunately cant take antibioitics. I was on minocycline for a long time and developed tinnitus. They believe that's the reason I developed it bc I was not subjected to loud noises etc. Long term antibiotic use can lead to tinnitus, as I said I seem to get the bad side effects. Tinnitus is pretty awful but have learned to

deal with it, I handle it much better than my acne.

I cant wait for the day where I don't have to worry about whats going to pop up on my skin. I cant wait to get over the anxiety. When I'm not breaking out I am truly a happy go lucky person and I don't have anxiety. The anxiety comes from my acne..totally sucks.

I'm so glad to hear you've had success, I'm so happy for you!

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(@tracy521)

Posted : 09/08/2014 12:51 pm

heck yeah for sure i think spiro is a miracle drug! what about keflex? would that bother that tinnitus? i can feel your pain i went to many clubs back in the day and had tinnitus for years i just got used to having that ringing in my ears and then one day like 5 years later it went away. i was so worried though i thought i was going deaf so i had to get a hearing test through my doc but thank god everything was fine there.

i 100% know how you feel with the anxiety thing its a real bitch. i think that has to be like the worst feeling ever but just know once you get on spiro and you start to clear up then that anxiety will slowly fade away but you need to give it time to work. it could take 6-9 months to fully kick in.

thank you so much i am so glad that something 100% worked for me its been a long road the last 16 years. keep me updated on your progress and stuff! good luck with everything take care!!

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(@shadylee)

Posted : 09/09/2014 10:27 am

2nd day, obviously nothing to report..except of course a new spot on my chin..

I swear i'm going to have a nervous breakdown, the anxiety is never ending. I wake in the morning filled with such a scared anxiety feeling, its the worst. I look in the mirror and cant believe its me. I have not had one day in over 3 months where something new hasn't popped up. I'm truly at a breaking point.

Tracy, I might look into Keflex..i took it a couple of years ago and I liked it..just always scared about tinnitus. Yours went away? I always hope but now its been like a year and a half, and they say if after a year its not gone, its usually permanent. I sometimes I really have bad days where it spikes, but for most part I habituated to it...I have concern with spiro bc it is a diuretic and that can aggravate tinnitus too..Also I have dry eyes and MGD, the reason I had to stop Accutane, my eyes got so unbearable, swelling, redness, and major discomfort. I just read spiro can aggravate that too. Im just praying my body will handle spiro ok..I truly feel like its my last hope. It sucks worrying about side effects, it gives me such anxiety.

Needless to say, im at a very low point right now..very scared, filled with anxiety, and just really sad

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31
(@like-moonlight)

Posted : 09/09/2014 3:05 pm

I'm another one of the members that have hormonal acne with hormones blood tests coming out just fine. I have been on spiro for 18 months and am loving my skin. I am also on 100mg and that is what has worked for me, I have zero side effects. When I first started I seemed to urinate more frequently. That went away after a week or two, never bothered me though. It's been a easy ride.

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(@brenmc)

Posted : 09/09/2014 3:16 pm

Was the DIM helping or hurting your acne do you think? How long were you on it? What dose? Did you notice any improvement? Were you taking a liver support with it? I'm asking because I was on spiro for four years and it stopped working for me. It can lead to other health issues as well. I'm now on DIM.

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(@shadylee)

Posted : 09/09/2014 4:08 pm

Moonlight, love hearing successful stories..I'm so hoping I have minimal side effects..I wont even know what to do if this doesn't work..

Bren, I think I was on DIM for around 7 months. DIM supreme by solaray...100mg DIM and it also had 100mg of broccoli seed extract, whatever that is,lol. I really think it hurt my skin. I broke out a lot on it, but I stayed on it thinking it was IB..I also stayed on it because I have fibroids which really gave me bizarre painful periods. DIM truly helped with that, the pain was literally half of what I used to go thru. After about 2 months on DIM and still breaking out I added saw palmetto..and after a couple of weeks of saw palmetto, my skin cleared up and I had clear skin for over 3 months, it was glorious. I thought I found my answer. But that all ended, I just started to get cyst after cyst. I wish I hadn't taken DIM, but who really knows what is causing the rise in my acne. My endo kind of scolded me for taking it..As I said my first blood test came back that I had extremely high testosterone levels..and after abt a month of not taking DIM had blood tested again and my hormones were normal. Don't know if it was lab mistake first time or what..I do know my acne got worse on DIM, and only got better with saw palmetto.

Please know i'm not bashing DIM in any way..I've seen on here where it has truly helped many. People have acne for many different reasons and that's why we each have to find our answer...

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61
(@shadylee)

Posted : 09/09/2014 6:15 pm

ughhh..spot on my chin has turned into full blown cyst..of course bc im going to work tomorrow. My skin has never been this bad, not ever. Im 47 years old, when does this end? I cant stand this anymore, i'm so tired of crying my eyes out. Something will start to heal, and something new comes up. Not to mention that now the marks stay around FOREVER..I used to heal so quickly...

All my drs...the endo, the gyno, the derm and my pcp...they all tell me this is common, woman in their 40s get acne...Really?? bc I never see them..I am so embarrassed by the way I look. I cancel plans all the time now. Im sorry im ranting, but every time I think..ok..this will stop..it never does.. ugggggggggghhh

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(@like-moonlight)

Posted : 09/09/2014 7:59 pm

Have patience with the spiro. Many do not see results until 6 months or even more. Then the real good results come, if the acne is hormonal. Keep hanging in there. Keep getting the cortisone injections in the mean time.

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144
(@tracy521)

Posted : 09/10/2014 2:35 pm

yeah i can see being scared for sure about the tinnitus with the keflex. the only thing i can say is to try it and see how it goes. yeah mine went away it lasted i think for at least 5 years or so. the doctor said it would probably never go away too but thank god it did. it never really bothered me except for when i would go to sleep but many times i would just put on my ceiling fan and that would drown out the noise.

i sure hope spiro can help you since you have been through so much. you deserve to have something go your way for once. keep me posted on your progess and try to hang in there!

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61
(@shadylee)

Posted : 09/10/2014 6:48 pm

well, utter misery..another 2 spots growing..I have derm appointment tomorrow so at least I can get them shot. I don't even get excited abt shots anymore, they used to be miracles for me. Now they leave a nice red mark behing that takes forever to go away..and new spots just pop up the next day anyways..oh well..

Promised myself I would not break down today...NO CRYING..nearly did but held it together. I'm just going to try to take it day by day, willing myself not to get upset, it does no good anyways. I only pray spiro will be my answer..wish I cld fast forward to 2015..stinks wishing time away..

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(@brenmc)

Posted : 09/12/2014 12:35 pm

Thanks for the reply shadylee. I am also at a loss because I don't know if DIM is helping or hurting my skin!

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61
(@shadylee)

Posted : 09/13/2014 11:41 am

6th day..

Went to derm on Thursday just to go over spiro..He was pretty useless. He's going to keep me at 50mg a day..I'm still taking 25mg til Monday just to ease my body into it. I actually didn't get any cortisone shots bc my face seemed to be healing.

Yesterday I felt really good, everything in healing stage..But of course woke up this morning to 3 new spots..I do have to say my spots seem smaller, not so cystic. What I hate the most tho is..I'll feel a lump and I never know what it will turn into. My spots seem to take a good 24to 36 hours to develop into what they want to become. Its always a waiting game of anxiety to see what each lump will turn into. Sometimes I think they are going to be god awful and they end up not being so bad..then sometimes I think this is not going to be so bad and it ends up being a gigantic cyst..all so tiring.

So far no side effects..yay!

Was wondering tho..Girls on spiro..Do you watch your potassium intake? Is it something I shld be very conscious about? It seems all my favorite foods are rich in potassium..

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(@brenmc)

Posted : 09/13/2014 2:09 pm

You should avoid tomatoes, bananas and potatoes. Sometimes taking an Advil when you feel a spot coming on reduces the size.

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61
(@shadylee)

Posted : 09/15/2014 8:26 am

well,

Feeling horrible..Have biggest cyst I've gotten in very long time on chin, and another one under my eye. Just got appointement for shots today, I was just at derm on Thursday..so frkn tiring.

I used to be shot crazy..as soon as a cyst appeared I wld go get a shot. Now I try to live with them just bc I know tomorrow will be a new one, so they seem kind of pointless...And even tho I have insurance, its getting kind of pricey..I've been going like once a week for last 3 months. Not to mention endo and gyno appointments..ughhh.

Unfortunately the one on my chin is just way too big for me to ignore. I'm filled with so much anxiety. I really hate going to the derm. I get such anxiety over it, I don't know why. When I go for shots I always get the PA bc she is the best "shooter"..I've had drs that have actually missed the cyst which is the most annoying thing on earth. I've also had some shots where the cyst got worse... Patty the PA, she always gets right in there and within a day its like 90% better. The problem is she's not the nicest or sympathetic person. I've gone in there crying my eyes out at times, and she cld care less, lol. I also hate waiting in the waiting room, I swear I am the only person there with acne..I just get stressed going, I know it seems dumb, but I do.

Going to jump to 50 mg today since my body is doing fine on 25. Hoping in a few weeks my face quiets down. I'm not even looking for perfect skin..I just want the cysts to stop. I wld kill for a few days where i'm just not breaking out...keeping my fingers crossed

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61
(@shadylee)

Posted : 09/16/2014 2:08 pm

Day 9

Well I felt good for abt 12 hours, lol. Got my shots, felt pretty good last night bc the spots were coming down. I had 4 altogether bc derm felt 2 others coming up. Woke up this morn, was still feeling pretty good, even tho the large cyst on chin didn't come down as much as I wanted it to..I'm thankful its not bright red

Fast forward to now..just got back from some errands. Looked in mirror of course and BAM..3 new growing spots!!! How in the hell does this happen??? I swear this acne is going to be the death of me. I just want a little break, I truly cant take this. Oh and not to mention I think I'm forming a lip zit, which I cant stand. I literally get them right on the line of the lip and skin. I hate them bc they turn bright red and sit on my lip for ages. Oh and also have a zit in my eyebrows which im not counting either bc its hidden, but who the hell gets zits in their eyebrows?? God i'm praying spiro works.

I'm having zero side effects, knock on wood..Im a freak, I keep staring at my eyes bc I have dry eyes from Accutane. If they get really dry my lids and lid margins swell really bad, its quite ugly. They say spiro can dry out the eyes, so of course i'm obsessed..Also forever making sure hair isn't falling out..I'm such a paranoid freak. If only I could chop off my head I wouldn't have to worry about all this, lol

I so wish I cld fast forward time..I hate wishing time away but its not like i'm enjoying my life right now. I hate that I let acne do this to me, especially since I have a pretty great life..absolute fantastic loving husband, great friends..etc...Wish I could accept my acne, not let it bother me, but cant ever seem to do it

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(@samanthabaker99)

Posted : 09/16/2014 2:13 pm

Hi ShadyLee,

I'm 45 and I'm still battling the acne monster too :). I've been on 50mg of Spiro for about 5 years and it has kept me really clear (except for infrequent flares on my back). I'm currently deciding if I want to go OFF Spiro because I'm feeling more of the side effects after all these years. My advice/experience with Spiro:

1. Give it time. You might need a higher dose. I started on 100mg and then went down to 50mg and it was perfect. It took about 2 months for my skin to clear.

2. Drink TONS of water. I'm not kidding. Spiro is a diuretic and you must stay seriously hydrated.

3. Watch your potassium intake. Your derm should be testing your blood during the first several months for safety reasons. No bananas, limited potatoes, etc.

I'm meeting with my second derm to talk about Accutane tomorrow. I'm at my wits end. I'm 45 and too embarassed to wear a strapless dress because my back looks like a war zone. I never thought I would wish for menopause :).

Hang in there and see if the Spiro will help you. It was truly a miracle drug for me, but our journey might be ending now that I'm headed towards middle age. Sigh. 25 years with acne and still counting.......

Samantha

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(@shadylee)

Posted : 09/16/2014 3:54 pm

Hi Samantha,

Ty so much for responding..It so helpful to get support, advice and encouragement. I also love hearing how spiro has helped. I'm sorry to hear you're experiencing side effects now, can I ask what they are?

It totally sucks suffering acne at this age. Its funny you mentioned menopause bc all my drs say the acne should get better after I go thru menopause. Just like you i'm actually hope it comes soon..who would think that someone wld wish for menopause? It so frustrating not to have any signs of menopause and getting my period like clockwork every month...I keep hoping for a late period, a hot flash..anything...hahaha

What I get scared of is now that i'm obsessed with my skin I google everything. Of course I found where a lot of woman still suffer from acne after menopause, even a woman in her 70s. I always tell my husband I am going to be in my 60s and still suffering, hes like no way. The thing is I've had acne since 16 and it just got worse and worse, so why wouldn't I be one of the women that suffer into their 60s? As you can see i'm in downward spiral of doubt of ever having clear skin lol.

I used to get back acne, but for some reason it stopped. Acne is such a bizarre thing, no rhyme or reason.

Please keep me posted on your decision about Accutane...And ty so much for the words of encouragement, I really needed!!

Lisa

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(@samanthabaker99)

Posted : 09/16/2014 4:16 pm

Currently the suspected Spiro side effects are: weight gain, muscle soreness/joint pain and fatigue. Or it could be that I'm just a worn out mother of two who is 45 and feels like hell . Not sure, so that's why I'm going to see a new derm tomorrow. I had a horrible flare on my back beginning in April, and nothing short of Napalm would get rid of it. It was unbelievable. Nothing like putting your shirts in the washer with blood on them from an exploding zit. How old am I again?

I better not be one of those old ladies who still has zits at 60 years old! OMG, I won't make it. That would be the cruelest irony of them all right? Old with acne. Why must life be so cruel? Sigh.

Did you take Accutane? How did you like it? One thing I have learned in this acne journey is that I have to listen to my instincts. I finally developed a skincare regimine that would make other people's flesh fall off in chunks, but it's the only thing that keeps me clear with Spiro. I truly believe each person is different and despite all the derms telling me not to "overwash" my skin, that's exactly what it needs. It needs to be scrubbed/exfoliated daily or I will break out. Period. I love it when people who haven't had a zit since 1985 give unsolicited advice about chocolate, diet, exercise, etc. They have no idea. That's kind of like me giving a cancer survivor advice. I thankfully haven't had cancer, so I have no idea what it feels like.

What dose of Spiro are you currently on? How are the side effects right now? How long have you been on it?

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(@shadylee)

Posted : 09/16/2014 4:36 pm

That's so funny bc my skin loves harshness too, lol..I use tazorac every night and acanya in the morning. I've tried other topicals on and off, but this combo seems to be the best..my skin tolerates it fine.

I was prescribed 25 mg twice a day. I only have been on it for 9 days now. Also I only started the full dosage yesterday, I only took 25 mg for the first week. I wanted to see how my body would react to it..I just get so paranoid of trying new meds. So im at the very beginning of a long journey :(

I tried Accutane a couple of years ago. Unfortunately I got severe dry eyes. I was only on it for a little over a month at 40 mg. If I was nearing the end of my course I definitely would have finished, but with only a month in, and the way my eyes were, I decided to stop. My eye dr. thought it was good idea..unfortunately Accutane doesn't discriminate which oil glands to zap. Also it wasn't like I had red itchy eyes that eye drops wld soothe..I had major swelling of lids and the margins of the eyes. The oil in your eyes is suppose to be clear, and mine was white globby ickiness. Fortunately they are much better now, but sometimes annoying. Obviously this doesn't happen to everybody...also lots of people experience dry eye on Accutane and their eyes go back to normal after the course. I don't bad mouth Accutane bc I truly think it is a miracle drug, unfortunately my eyes couldn't tolerate it. i'm the minority :(

And ugh, I so hate the advice from people who think if you just wash your face and put some Clearasil on it, it will work...Like really? I wish I thought of that in the past 30 years..dummies!

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(@kirks)

Posted : 09/16/2014 9:43 pm

Hey Shadylee,

I was prescribed tazorac too, but I have stopped using it upon the advice of others here. I tested it first, only applying in certain areas and leaving others bare. I believe tazorac amplified some of my cystic acne, and it certainly did not help with the healing process. I think it works okay on small zits, but when it comes to cysts, BP, advil, ice, and plenty of rest is your best option. I really am finding out that less is more when it comes to skin. Tree oil might be good to dab on some spots too.

I feel you on this cystic battle. I know it is so rough. What helps me is trying to do something for me every few days. Something that makes me happy, whether if that is indulging on some chocolate or walking the beach or allowing myself to sleep in. Easier said than done, I know. Oh I know the anxiety of never wanting to go out or be seen (still feeling it). It is a struggle, but as you told me, you are not alone!

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61
(@shadylee)

Posted : 09/17/2014 3:26 pm

Hi Kirks,

I thought tazorac might be too harsh too. A couple of months ago I switched to aczone, wasn't my favorite...and then abt 3 weeks ago was switched to clindamycin gel. I kind of liked clindamycin but makes me really oily and my skin just didn't look the same to me. So now back on taz and acanya.

I know what you mean about going out and doing things. On the weekends i'm pretty good bc I will do stuff with my husband. We live in a great little village with lots of bars and restaurants, so we'll go out to eat and walk around. I have a favorite place bc its nice and dark lol. I don't have as much anxiety about going out if the hubby is going with me. During the week I work 2 to 3 days, and fortunately my best friend is my boss. So if I feel like hiding out she lets me.

During the week I would go out shopping, take a walk around the lake, but now I mostly sit home, its the only place I feel comfy. I'm hoping that will change, cant wait for the day I feel normal again.

Update..same as usual new spots. I do have to say my face looks ok, no big red cysts and things are starting to heal..but I keep getting abt 3 new spots a day. They are weird lil f'ers, lol. They are like these hard nuggets of sebum...they start off feeling like a tiny pebble..they will either sit there like a nugget and not get too inflamed..or they will get big and be right at the surface of the skin. You can totally see the white hard pebble and it sits above the skin. I hate it bc it totally looks like they are right on the surface and I cld just prick them with pin. The problem is when I try that the stuff never comes out, its so bizarre bc its literally at skin surface. I've finally learned not to f with them, when I do I always make a mess of it. I'll turn it into a cyst and a red mark that lasts for ages. The weird thing is when they turn cystic and I go get them shot, the inflammation will go totally down but I can still see the stupid white nugget..very frustrating. So as of right now I have 3 new one of these and have no idea what they are going to do..I just got to keep my hands off of them.

Still no side effects, been a freak looking in mirror to make sure eyes aren't getting irritated and no hair is falling out lol...Cant wait till I start feeling ok about taking spiro, not be so paranoid abt side effects.

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(@shadylee)

Posted : 09/17/2014 5:43 pm

ok..omg..in 2 hours time ...went from feeling ok..to crying my eyes out.

those dam spots have swelled up..they are going to be doozies. I truly don't get it, they were fine all day..and in a matter of a couple of hours they blew up...I swear I cant take this anymore, whenever I have a glimmer of feeling ok, its taken away. Every single day I get something new.

I know I've been an utter downer, I know I have to be stronger than this. I just cant seem to do it..its like I've lost hope. I'm so terrified spiro isn't going to work. I just have no more strength to deal with this. I feel so sorry for my hubby bc he goes thru it everyday too..I cant imagine what its like for him. My mood changes in matter of minutes..i know my sadness just kills him..

I wish I knew why my skin went so haywire..i feel so hopeless and sad

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(@leelowe1)

Posted : 09/17/2014 8:05 pm

Chin up hun. Spiro can take 3 and most likely 6 months to work and many people report a purging period. Green Gables is one to talk to about it. You have a ton of people that love and support you so don't ever feel alone

Rooting for you!

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