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just wanted some info-any success stories??

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  • just wanted some info-any success stories??

    I wasn't able to read any of the threads for some reason....
    so i figured to put this up....
    i have gone through many meds such as elmiron (had to stop (tried it on 4 separate occasions so not like i didn't give it a real go) since it hurt my stomach too much), hydroxyzine, vesicare, detrol (made me incontinent), doxepin, imipramine, lyrica, neurontin, elavil, remeron, cymbalta (was more for depression at the time but hurt my stomach too much)
    i do take oxybutinin (ditropan) for flares and sometimes i just take it just to make sure not to have a flare but it is more of a med for flares since it does cause some gastrointestinal effects on me.....
    was wondering with cytotec if there is any success stories?
    i can't have kids so thats not an issue but are there anyone one it still that love it? does it work to help with the bladder??? any other big side effects with it?
    just wondering.....
    thanks
    Have dealt with chronic pain and gerd/ibs since '98 endometriosis, vulvodynia diagnosed 2000, ic diagnosed around 2004, chronic epstein barr-like virus 2011
    Hysterectomy/oophorectomy 2014 endo had destroyed everything
    Now dealing with recurrence and menopause in late 30s
    Other things--migraines, chronic hives, eczema, raynauds, congenital scoliosis, broke 3 vertebrae in middle of back when i was 16, heart defect (ventrical septal defect)

  • #2
    Is it not pulling up the old threads? If that's the problem look below the "box" that threads are listed in. There is a box labeled "Display Options". It will let you look back further if you change the dates.
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

    Comment


    • #3
      You have to do what you think is best.If you are able to raise that amount without it causing you further financial distress,then I don't see why not. However,if you are doing it because you feel that you are going to be sued if you don't,and the result of doing so will place you in further jeopardy,then it wouldn't be a good idea.If you know that making payments is what you are only capable of, then do so.If you cannot handle the pressure and want some sense of security in knowing you will be safe, call me and I will help you out.Or,seek professional assistance elsewhere and get to where you need to be.There is a box labeled "Display Options".It will let you look back further if you change the dates.Thanks.
      r4i kort

      Comment


      • #4
        what are you talking about being sued??
        i just wondered about this med?
        are people getting sued for taking this med?
        i don't understand...
        Have dealt with chronic pain and gerd/ibs since '98 endometriosis, vulvodynia diagnosed 2000, ic diagnosed around 2004, chronic epstein barr-like virus 2011
        Hysterectomy/oophorectomy 2014 endo had destroyed everything
        Now dealing with recurrence and menopause in late 30s
        Other things--migraines, chronic hives, eczema, raynauds, congenital scoliosis, broke 3 vertebrae in middle of back when i was 16, heart defect (ventrical septal defect)

        Comment


        • #5
          I am so confused.

          Did you ever get your question answered Steph??

          Comment


          • #6
            no actually i didn't....
            all i wanted to know is if there were any success stories and how was the med, if it helped or not....
            i am not sure what that one said about getting sued was about....
            if you have any info i would appreciate it
            thanks
            Have dealt with chronic pain and gerd/ibs since '98 endometriosis, vulvodynia diagnosed 2000, ic diagnosed around 2004, chronic epstein barr-like virus 2011
            Hysterectomy/oophorectomy 2014 endo had destroyed everything
            Now dealing with recurrence and menopause in late 30s
            Other things--migraines, chronic hives, eczema, raynauds, congenital scoliosis, broke 3 vertebrae in middle of back when i was 16, heart defect (ventrical septal defect)

            Comment


            • #7
              I wish I could help you, but I have never taken it.

              I took myself off of all my meds about four years ago. I just couldn't stand feeling like I was in a coma all of the time.

              I just try to watch what I eat. If I'm having a flare, which is usually my own fault, I try to eat all organic and take barley grass tablets. They really help me.

              I hope that someone comes along and answers your question.

              Peace...Christie

              Comment


              • #8
                stef - I am thinking the message about "being sued" was put in the wrong place or something. Weird.

                Were you able to find the old threads? If not I can probably find them and then paste in a link or two for you.
                Kim

                Diagnosed August 2001

                Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                *****************************

                “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                Comment


                • #9
                  Stef,
                  Yes, these posts were hilarious to read . Although, I'm sure it was not funny for you. You may want to PM April Chen who has had taken Cytotec. I'm sure she would give you information.
                  Teresa
                  Teresa

                  We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                  Comment


                  • #10
                    Cytotec

                    I took cytotec, and it didn't do anything for me. There are instances of people on this board (thought very few) who have taken it and had great results. There were no side effects really...but hardly any medications give me side effects. It is worth trying, but I would say it is a long shot, so don't get your hopes up too high.

                    You are in Canada, if I were you, I would get treated with Uracyst, it is not approved here in the US, but it is approved virtually everywhere else. It, along with cystistat, are the only approved medications for IC in europe, (elmiron is not approved) and success rates seem to be very good with no side effects. It is instilled directly into the bladder.

                    You can search it on this forum and see some people on this board report great success with it, and I have read the german IC forum and a lot seem to do well with it there. It is first line treatment there. It does not seem to work for everyone though. I theorize this is probably due to different etiology of IC in different people, in fact, it is only marketed as a treatment for "GAG deficient cystitis."

                    Onset of symptoms 1/04 after laproscopic appendectomy
                    Diagnosed with prostatitis 3/04, again 6/04, again 9/04, went through various cycles of anti-biotics.
                    Self diagnosed with PFD 6/05, received PT on and off for a year with good results but recurring symptoms.
                    Self diagnosed with IC 2/07, officially diagnosed via potasium test 3/07

                    Current meds:

                    Uracyst
                    Benedryl

                    Having great results with Uracyst

                    Alex

                    Comment


                    • #11
                      Stef,
                      I agree with Alex. I would first try the Uracyst or the Cystistat. Cystistat is more expensive and it sounds like from what I've been able to read Uracyst may work better.
                      Teresa
                      Teresa

                      We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                      Comment


                      • #12
                        hi there

                        thank you so much you guys...
                        yeah i been through so many of the other meds that i am kinda freakin out as to what to do next, i never had a hydro, or any instills, or other experimental treatments.....
                        so i know there are still stuff on the list to try, but still freakin out as to which to try and what to do....
                        i do have a uro appointment on the 14th and it can't come soon enough....
                        i just want something to hopefully stop the flares....
                        i do find oxybutinin(ditropan) a saviour when flaring since it calms the bladder spasms right down but it kinda makes me a bit loopy.....so i don't want to take it everyday sorta thing ya know?
                        so i think i will discuss the hydro and the different instills and also see what other treatments he recommends.....
                        i hope to move next week so i dunno how i will do that with flaring every so often and the tiredness that comes with that....
                        but thanks so much for your help with this....
                        Have dealt with chronic pain and gerd/ibs since '98 endometriosis, vulvodynia diagnosed 2000, ic diagnosed around 2004, chronic epstein barr-like virus 2011
                        Hysterectomy/oophorectomy 2014 endo had destroyed everything
                        Now dealing with recurrence and menopause in late 30s
                        Other things--migraines, chronic hives, eczema, raynauds, congenital scoliosis, broke 3 vertebrae in middle of back when i was 16, heart defect (ventrical septal defect)

                        Comment

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