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  • glassd18
    replied
    Sacausa that's great!! I wish it would have worked for me, but I just had terrible side effects that I didn't tolerate well...diarrhea being the main one. Sorry for the description!!! I was just prescribed Neurontin, but haven't picked it up yet. Is there anything you can tell me about it? What to expect etc... It was prescribed for me from the neurologist for my back and hip pain at bed time.

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  • Moonheart
    replied
    I can tell that one for sure because even if I have a pore that gets overly cleansed it bleeds...and bleeds....and.....

    you get the picture.

    I have sores that just don't heal for weeks now. But if it works..... *sigh*

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  • vm
    replied
    (Even Elmiron has been around since about 1966 - used in Europe as an anticoagulant... )

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  • sacausa
    replied
    I know using Cytotec to treat IC is experimental. However, I don't think people realize that Cytotec has been around for AGES to treat stomach ulcers by reducing acid etc. It's actually been around much longer than Elmiron. But I'll get off my little soap box now

    I think I'll probably have to take it for the rest of my life.... I can't miss a dose without feeling it in my bladder (insane burning/pain) so I'll happily take it forever..

    I had a moment last night where I looked at my hand and there were only three pills that I had to take... One for my heart, one for allergies, and one for IC. It was an amazing experience because two years ago, I had to take 11 medications everyday (Elmiron, Ditropan, Ultram, Neurontin, Menest, Depo Provera, Allegra, Atarax, Bentyl, Toprol for my heart, and Levothroid for my thyroid!)

    Quite a difference if I must say so myself

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  • Briza
    replied
    That's great! I'm so glad it's worked well for you. Do you think you will always have to take cytotec, or will there be a point where you can try going off of it?
    Hydros not fun. But I do also wonder what's going on in my bladder compared to my first one in 2004, since my symptoms are so much better now. But you'd probably have to hog-tie me or put me in a straight jacket to get me to the hospital to have one
    Keep us posted on your progress. Always good to hear a success story, especially with one of the experimental meds.

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  • sacausa
    replied
    I've been on Cytotec now for almost a YEAR! It's been amazing, I'll write a detailed update soon... but right now I'm in the process of stopping Neurontin, so soon I won't be on any medications for IC/IC pain except the Cytotec. I hated the cystoscopy with hydrodistention, but lately I've been curious as to what my bladder looks like now. Before, my bladder was covered with pin point bleeding and glomurations*howeveryouspellit so I'm kind of interested to see how it has recovered. I do know though, that I can't skip a dose of the Cytotec, because if I do, I feel it!

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  • glassd18
    replied
    I'm curious too Sacausa, and nice picture too pretty girl!!! I haven't even attempted to try it again after my first attempt.

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  • Briza
    replied
    Hey, you changed your picture! Looks great!
    Are you still taking Cytotec? How is that going?

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  • sacausa
    replied
    That's awful Kadi! This particular friend and I have actually worked out our differences in the mean time (after not speaking for two months)... we had been best friends for 5yrs without any serious fights so I just think we reached a boiling point where we both needed to get things out... since then she's been much more supportive etc. and I have also been more understanding of her (since she has known me since before I got sick, there were also adjustments for her which can be easily over looked).... Anyhoo, so that's my deal.

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  • kadi
    replied
    Hi sacausa,
    Hmm, your friend's comments sound a lot like something one of my "friends" said to me when I first got sick. And she said it to me in front of two other friends during dinner. She probably didn't expect me to tell her what I thought of her comment & her perfect little life, but she did turn gray by the time I was finished. We didn't speak for a year, but have exchanged notes of apology since. I don't think I'd have much to say to her even now though.

    One thing about IC is that it does "sift" out the true from the weak friendships. It tests not only our own character, but that of those we are close to. I can honestly say that my friendships now are 10x better than before IC, so while the losses were sad at the time, I'm over it now & am very happy with the people who have stuck by me.

    Hang in there with school, summer's right around the corner!

    Leave a comment:


  • sacausa
    replied
    aawe thanks! I got it from Urban Outfitters.. .they have great shirts like that

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  • mayray
    replied
    your t shirt

    SAcausa, I love your T shirt. I grew up with the Beatles, saw them in concert when I was 10 years old. Well Ill end right now is making me feel old.

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  • glassd18
    replied
    Hi Firestarter,

    You are definitely not alone!!! It takes a while to learn about what we can and can not tolerate. I'm very sensitive to chemicals in vitamins, supplements, medications, and food. I have tried MSM tablets, but can not take them as I flare. I've tried the liquid without preservatives as well and flared from that too. I take Cysta Q, and Cystoprotek although right now I'm taking only Cysta Q. I'll add the Cystoprotek back in again soon, but of course you can't take these both at full dosage because they both have Quercetin. I take 2 Cystoprotek in the am, and 1 Cysta Q at night, and this combo seems to help a lot along with the diet. I hope you find relief soon.

    Leave a comment:


  • Firestarter
    replied
    wow... all your stories sound like mine!

    Hi,I'm a 34 yr old man and sufferring from IC for the last year... God and you all only know my pain and anxieties. Reading the stories about how others dont want to listen to our pain reminds me of how some of the people in my life have back off and dont want to listen to my agony. I bare with my pain every other day and the frequency is daily.

    It's tuff but I know that soon I will find a solution like many of you have. I'm currently taking Elmiron which does nothing, bladder installations which work momentarily and for anxiety Hydroxyzine Pamoate. I am also trying supplements with dinner like Gloucasamine w/ msn, quercetin as recommened here in the IC network by other patients.

    I'm really trying to cope and have a normal life again and stay positive.

    Thank You all for posting your wonderful and insightful threads.

    By the way does anyone know where can I get cytopec or Cyclosporine-A?

    Leave a comment:


  • yvette
    replied
    Congrats Kiddo, you earned it!
    As far as the friendship thing...relationships come to end, sometimes,its not just with boyfriends....I'm sorry tho....it sucks just the same...
    I'm telling you, you'll find friends who won't care about your IC or this or that...or what ever comes with it.....I speak from experience.

    I cut all high-maintenance people from my life...I figure there's only room for one hi maintenance person and that's *me*! It's funny, I'm finding that we all have problems and we all have different things to deal with....and I've got friends who have kidney problems (pain, pain, pain) and colitis problems (bleeding, pain, being bedridden for days or weeks).

    You'd never know from looking at us, or talking to us....but's it there and well what can you do? Do the best you with what you got...the right people for you will get it and that's all that matters.

    Again. Congrats! Rest and Relax

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