Announcement

Collapse
No announcement yet.

Has anyone stayed in remission and never had a reoccurance

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Has anyone stayed in remission and never had a reoccurance

    Is there anyone out there who had been in remission for a long time and it still has not come back? How long does a remission last? Can you eat the forbidden foods when you are in remission?
    Good luck to everyone and take care!

  • #2
    My uro had one IC patient who had a twenty year remission. She came out of her remission about the time I was being diagnosed.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      I had a nice 4mo remission while on Elmiron and Elavil and sticking strictly to the IC diet. During that time I had days where I could forget I had IC. I was able to eat chocolate again and have coffee. Still wasn't able to eat Spaghetti or chili or lasagna, but it was nice to be able to add some of the yummy foods back in. I think that if I were to continue on with the meds I would've stayed in remission longer. I had to wean myself down as I'm trying for a baby. I'm still doing okay, took my last Elmiron pill today and will be off the Elavil in about 15days, will see what happens then. So far I've been able to sneak a little chocolate in here and there and its okay, and last week I was able to go out for drinks (that had OJ and soda as mixers) and did just fine. I have pain maybe 3-4days of the week again now, but its not as bad as it used to be and when I get the urgency I'm able to hold it longer now. I'm so hoping for remission for all of us. I really didn't think I would ever get better. I'm so glad to be wrong! Plan on going back on my meds as soon as I can after I get pregnant and have the baby, that is unless I'm one of the lucky ones who goes into remission during that time. Wouldn't that be great?!

      Comment


      • #4
        I have a friend with IC who has been in remission for 4 years. No symptoms, eats & drinks normally. She is going to have a baby in a few months, no problems in pregnancy either.
        Kadi

        -------------------------------------------------------------
        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        ------------------------------------------------------


        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest
        "


        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!

        Comment


        • #5
          My pain management doctor has IC (yes, I do know how lucky I am!) and she has been in remission for more than 14 years.
          Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
          Wishing you happiness and good health, and all the best out of life.

          Peace, Carolyn
          ___________________________________________________

          Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


          On the Beach with IC

          Comment


          • #6
            I had a 5 year remission with just being on Elmiron. I was able to eat and drink what I wanted, then I had a hyster. in 2000 and that was the end of that, since then I had days where I was doing fine without pain.

            Comment


            • #7
              Well mine has come back, so I guess I don't really fall into this category. But, it lasted over 4 years (with one mini-flare 6 months before it came back full time).
              I ate and drank anything I wanted (but I don't think I am very diet sensitive anyway).
              I never had any pain or discomfort. I totally forgot that I even had this terrible disease!

              ~*miz_sunshine87*~
              19 y/o student, salesperson, fashionista, future high school teacher. <3 to sing and travel. Dream job= cruise ship entertainer
              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
              My IC story- diagnosed at age 15 (Feb 2004), after approx. 6 mos of symptoms. Went into near complete remission following hydrodistention and introduction of meds. Feeling so good that I started skipping meds (bad idea). 1 week flare (May 2006). New flare November 2006-present.
              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
              My triggers- I'm not sure about food triggers, just started IC diet but so far doesn't seem to be doing much. Stress is a big trigger for me though. Both flares this year came during stressful times. I think that stress reduction will help me immensely (last flare went AWAY during vacation in Mexico when I was drinking margaritas like they were water;P).
              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
              Start of IC symptoms- Summer 2003 (after a UTI)
              Dx- February 2004, after hydrodistension (ouch!)

              Current treatments- Amytriptyline (25mg), Hydroxizine (25mg), MSM w/Glucosamine (1000mg,3x/day), quercetin (500mg, 2x/day), trying to stick to IC diet, prelief as needed.

              Previous treatments- Amytriptyline (10mg), Hydroxizine (10mg), Alesse (HBC)

              Comment


              • #8
                I had been in remission for over 4 years until a few days ago. It just spontaneously went into remission right before a pregnancy. I stayed that way, without meds or special diets, for 4 years (plus another pregnancy and two C-section births). It came back a few days ago and really hit hard yesterday. I go to the doctor today. Those were 4 fantastic years!

                Comment


                • #9
                  I too went into remission just before getting pregnant, and it lasted 8 years. When it came back, it hit me very hard.

                  Diana.

                  Comment


                  • #10
                    My guess is that anybody who may have went into a permanent or long term remission (still in the remission) - wouldn't be posting too much on these boards. They might even be in denial that they ever had IC to begin with.
                    Last edited by Janie Miranda; 04-25-2007, 04:43 AM.
                    hugs,
                    Janie

                    Comment


                    • #11
                      It's pretty easy to go into denial about IC! I've done it many times.

                      I know another woman locally who, when she went into remission, does NOT want to talk about it at all. She was lucky and found that Elmiron helped her, after she was in her 40's and has had IC since 6th grade.

                      Diana.

                      Comment


                      • #12
                        Diana,
                        Yeah, I brought up the denial part because I'm kind of doing that right now too. LOL
                        I'm one of the Elmiron responders too! I'm not in total remission but enough that I think . . . well, maybe it is just PFD or something.
                        Sorry, that you are out of remission.
                        hugs,
                        Janie

                        Comment


                        • #13
                          I'm so glad Elmiron worked for you! I took it for 3 years, and nothing. The heparin instills work better for me. Of course, it has to be the expensive labor-intensive thing that works better for me!

                          Diana.

                          Comment


                          • #14
                            I forgot to mention that during those 8 years of remission, the only time I ever had bladder pain, fleetingly, was when I had to take decongestants once, and again when I drank a bunch of vodka and orange juice to get on a plane! I remember feeling like it wasn't really gone, just lurking, and something was protecting me from having symptoms, probably hormones or something.

                            Diana.

                            Comment


                            • #15
                              That's interesting Diana, about thinking hormones were protecting you. My IC got bad when I went into perimenopause. I do think there is some kind of hormonal link.
                              hugs,
                              Janie

                              Comment

                              Working...
                              X