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  • What to do about this flare?

    HI all:

    I am a veteran IC'er but have been in a "remission" (almost in no pain) for a couple of years now. I don't know how I got better, but I did, and I almost thought the IC wasn't ever going to get bad again. Then last week, I started to have to pee a lot, but I didn't have any pain. The urgency continued and then, bam! I was hit by the IC I tried to forget all over again this past Friday. It's now Monday morning and I am still in horrible pain. I took some pyridium along with some pain meds last night, and it is not touching this pain. I am worried that my remission is over and my life is going to go back to when the pain was horrible day in and day out. Could this just be a flare? What are some things I can do to get out of it? I am about to move at the end of the month out of state where I don't have a doctor. This is supposed to be a happy time for me, and I am totally freaking out! I started taking Lexipro about 5 days ago. Could that be the problem? Have there been any new effective treatments in the past couple of years? I know a guy who does Botox and it has helped him, but I know that isn't covered by insurance and I'm hoping I don't have to go that far. Should I see a urologist? If there aren't any new treatments, then I am not sure what they would be able to do for me. Please help if you have any ideas! I am so worried.

    Sara

  • #2
    Sara,

    Are you sure you dont have a UTI? I'm sorry your in a lot of pain. I wish I could take it away for you. ((HUGGS)) I would call your uro right away. Lexapro.... I dont know much about that. But starting new medicine could throw your body out of wack. Hmmm maybe some of the other girls will be able to answer your questions. I will be praying for ya.

    Rachel
    ***Rachel***

    Dance like no one is watching
    Love like you've never been hurt
    Live today like it's your last

    Dxd with IC in June '06

    Comment


    • #3
      re

      Do you take anything for IC now?

      First..I would try to determine the cause of the flare.
      If its food related...drink a ton of water...and pee it out.

      If its stress related...I haven't quite figured out that secret yet.
      but I try baking soda & water to drink
      I even took a bath w/ baking soda this weekend.
      Relaxing is way easier said than done.

      But most importantly..know that it will pass. Regardless of what started it
      flares come & go.
      And now..that we know what it is..they go sooner..than that very first one..because we now know..what NOT to eat/drink.
      Quit ELMIRON due to hair loss
      Cystoprotek ROCKS!

      find me on FACEBOOK -
      search my email [email protected]

      Current Meds:
      AM Cystoprotek & ATARAX 50mg
      Dinner CYSTOPROTEK
      PM Elavil 25mg

      Comment


      • #4
        You should really get in touch with a uro and make sure its not something more.. It could be a UTI or kidney stones.. Hope you feel better soon...
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


        Link to Patient Handbook:
        http://www.ic-network.com/handbook/

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment


        • #5
          Thanks all

          I am literally dying! I've already taken two vicodins today and I'm still in tons of pain. It is my 30th Birthday too today, so I really can't believe this! I made an appointment with a new uro but couldn't make it until the 15th. Will there be anything new that she can try on me? I am so frustrated that they can't find anything good for this IC! I've tried Elmiron, DMSO, interstim trial, antidepressants, you name it. I am so scared that I'm never going to get out of this flare! I haven't had it this bad in a really, really long time.

          Comment


          • #6
            happy birthday

            happy birthday..and it will pass. it always does.
            Quit ELMIRON due to hair loss
            Cystoprotek ROCKS!

            find me on FACEBOOK -
            search my email [email protected]

            Current Meds:
            AM Cystoprotek & ATARAX 50mg
            Dinner CYSTOPROTEK
            PM Elavil 25mg

            Comment


            • #7
              Houstongirl,
              First, make sure you don't have a UTI. Second, if you just started Lexapro, it's likely that you did so because of stress, anxiety or depression. Those in and of themselves can cause a flare. Stress is my biggest trigger and it brought me out of a year long remission as well.

              Know that you are not alone and the fear you are feeling is completely normal. I too was in remission for quite some time and came out of it, unfortunately, in late December. However, we have both been in remission before...we can do it again!

              When I start to flare, I immediately go back to a strict IC diet. I also am not afraid to take anti-anxiety meds (better living through chemistry!) and I do so when I'm suffering with IC. I also take tums...they work like the baking soda trick, but they taste better. Revisit the things that worked for you in the past.

              Take care and hope we are both feeling better soon!
              mom_in_ma

              Comment


              • #8
                Happy Birthday! Sorry you are flaring! Like the others have said make sure its not a UTI - maybe you can drop a sample off at the doctors office? I just came out of a nasty one myself last week, it was no fun at all. Went to the doctors because I did thought it was an infection, but noooo. the doctor which was my family physican upped my medications a little temporarily and gave me some antibotics for just in case--I didn't need them so I didn't fill it.)
                Figure it had to be something I ate, been pretty good but who knows??!!
                Anyway, hope you feel better, we all know how it feels. Lay in bed, take some pain medications, have your heating pad and a good book or movie.

                Comment


                • #9
                  Feel like my life is over

                  Well, it's almost three am here in Houston and I'm up in pain. I tried calling my boyfriend who I have been planning on moving in with, and he didn't get what I was trying to tell him. I haven't suffered like this since I've known him, and he's not really good with problems like this anyway. He doesn't get the severity of the situation and how my life will be totally ruined by this, as well as our relationship. There is nothing I can do about this and I will now probably have to quit my job and go back on disability. I will not be able to work tomorrow for sure and I've already gotten in trouble for missing days, so this is not going to help my standing with them. This the worst possible thing that could happen to me right now. Tears...

                  Comment


                  • #10
                    Im sorry that you think this will totally ruin your life and your relationship with your boyfriend. There is one thing Ive learned through living with IC and that is that I HAVE TO GO ON. I have to pray and have faith and I can have a nice, life, I may be in pain going through the motions, but I still can have a life.

                    I hope you learn how to deal with this and get in to see a doctor fast.

                    Comment


                    • #11
                      Try thinking back to when you went into remission --- what treatments did you try that might have contributed to relief of your symptoms. Are you following an IC diet? That can be very important.

                      Definitely see your urologist as scheduled, but you really should be checked today to be certain you don't have an infection working. Your primary care physician should be able to do that for you.

                      Before you move, I suggest you ask your current physicians for suggestions on doctors near your new home.

                      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

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                      • #12
                        Donna

                        Thanks for your reply. I am going to my primary care doctor to see if it's an infection, but don't think it is. I am taking prelief without food to see if that helps any. I also started taking colostrum. This is on a whim as I don't know what helps me last time to go into remission. It pretty much happened spontaneously, just like my symptoms coming back again. I just took another pain pill, but I hate taking those. I'm praying that this is an infection, but it feels more like just regular, flaring IC. I am also going to see if going off the Lexapro helps. If I don't get better in a few days, I'll know that it's not that. I tried to explain it to my boyfriend this morning, and he says he understands but I don't think he does because he keeps asking me over and over again if I feel better. When I was dealing with this everyday, I did a pretty good job of "just dealing with it," but I'm not used to this pain anymore and I don't know how I'm going to deal with this, be able to work, and keep a smile on my face. Anyway, just venting... Thanks.

                        Sara

                        Comment


                        • #13
                          Totally with you Houston. I was in remisson for years and then it would come and go. Hydrodistensions helped for months at a time. Long months. And then the flare came back and the hydros stopped working. I guess I abused them. I have been in a constant flare since September on my honeymoon. I have tried another hydro, some instills and most recently Botox with no results. I have not worked in over a year because I just don't think I could hold a job at this point. It's difficult to concentrate and function when you are constantly on pain killers and calling in sick and getting no sleep. And I don't exactly want to go into a new job telling them I have a life altering, crippling disease. It IS tough to go one every day, especially when every day never seems to get any better. But hang in there, that's what everyone keeps telling me. It just keeps getting harder. I'm only 26. I don't even have kids yet. I wonder if pregnancy will help or hurt sometimes. sorry, just ranting

                          Comment


                          • #14
                            Hi Sara,
                            #1 priority - get checked for an infection ASAP. ....

                            If there is no infection
                            Talk to your doctor immediately about stopping the Lexapro. Some patients find antidepressants helpful, some find they can trigger the IC. If you started a new medicine, then noticed a surge in symptoms, there's a very good chance that it's your culprit.
                            I'd stop the colostrum as well, since that's another new thing you've tried this week.
                            Make your diet ultra bland. Review the "Understanding Diet & IC" article in the Patient Handbook linked at the top of this page.

                            It may take several weeks to ease your bladder, so try as much as possible to be calm. I know how awful IC feels, but I can tell you that I have active IC, managed with medication, diet & physical therapy, still have some level of symptoms every week, BUT my life is not ruined. I work full time, exercise, go out with friends, etc. Try as much as possible to control your thoughts - "This is temporary", "I will manage for now", "I will find a treatment that will help". Picturing your whole life destroyed will not help your symptoms, your emotions or your relationship with your boyfriend.
                            Replace each negative thought with a simple calming one, then distract yourself as much as possible.

                            Hang in there, wishing you luck at the doctor's appointment,
                            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!

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                            • #15
                              Oh I feel your pain. I was in remission for over 10 years and them bammm it IC hit in Feb. I was in total denial for two weeks before I dragged my sorry sore $##@%!! into the Uros office and begged for pain killers. I still weep about it. Why did it come back? We will never know for sure but I do believe that if you were in remission once then you will probably be able to get these symptoms under control again. The body wants to heal. I understand your fear and your pain. Please go to the dr. Please lean on this network. You are not alone and you must believe that the pain will pass. I ordered the cd for women with pelvic pain from the IC shop and it has been a great comfort to me. Call your family and friends and tell them you need help. Hang in there!!

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