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  • I'm afraid I'm wasting my money....

    My IC was great for nearly two years. Now I have been in this damn flare for almost 2 months now. I'm still on the same meds. My doctor upped my Elavil to 50mg. and I'm trying other OTC things to help. I asked my doc if the meds were not working for me anymore. She said no, some IC patients just have a bump in the road and then go on. Well, this is a HUGE freakin' bump! What gives? I feel like I'm wasting my money on all this medication that is doing jack for me. I'm scared that I will never get back to the remission I was in. I'm scared that the meds have just stopped working. I guess I'm just plain scared to live my life in pain like this again. I'm confused as hell as to what happened to send me into this down ward spiral
    Mom to:
    Ella~born 10/14/03
    Travis~born 5/8/06

    Meds:
    Elmiron~2pills 2X a day
    Elavil~50mg at bedtime
    Had great results with this for almost 2 years. Currently in a flare since 1/9/07 Trying Urised, lidocane cream, Cystoproteck and now Benadryl at night to try and stop it.

  • #2
    Did you have any procedures, like maybe a hydrodistention, before your two year remission? I know I have had as much as two years with little in the way of symptoms following a hydro. If you did, you might want to consider talkin with your uro about doing it again.

    Another thought --- are you following an IC diet? That can be very important.

    I just hope you feel better very soon.

    Sending gentle hugs,
    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
      Have you asked your doc about adding an antihistamine to your regimen? That's something that can make a difference for some folks - maybe you've already tried that.

      Any other changes 2 months ago?
      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


      • #4
        Donna~ Nope no procedures. Just took Elmiron and Elavil for 3 months and things started getting better. I do follow the IC diet somewhat, I avoid the 5 main things and stay away from things that I know bother me and take prelief with some meals.

        VM~ Yes, I actually started taking Benadryl Sunday, one pill at betime. Not sure how long I should wait that out to see if it helps. The only thing I started differently was BCP. I started them in October. I stopped them in the middle of Feb. to see if they were the cause of this flare. Not noticing anything yet.
        Mom to:
        Ella~born 10/14/03
        Travis~born 5/8/06

        Meds:
        Elmiron~2pills 2X a day
        Elavil~50mg at bedtime
        Had great results with this for almost 2 years. Currently in a flare since 1/9/07 Trying Urised, lidocane cream, Cystoproteck and now Benadryl at night to try and stop it.

        Comment


        • #5
          Maybe the BCP started a flare and it's taking some time for your bladder to recover? I know hormonal changes can sometimes wreak havoc with our bladders.

          I think the hydroxyzine antihistamines have a little different action than Benadryl. If Benadryl doesn't help you might ask your doc about Vistaril or Atarax.
          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


          • #6
            Atarax

            Hydroxyzine is the same thing as Atarax. Hydroxyzine is generic for Atarax. I heard they are not making Atarax anymore only the Hydroxyzine. That is good because it cheaper. But the antihistamine in Benadryl will not help the bladder, it may help you sleep.

            .
            PhlFx

            Comment


            • #7
              Originally posted by PhlFx
              Hydroxyzine is the same thing as Atarax. Hydroxyzine is generic for Atarax. I heard they are not making Atarax anymore only the Hydroxyzine. That is good because it cheaper. But the antihistamine in Benadryl will not help the bladder, it may help you sleep.

              .

              That's not necessarily true. I was told to take benadryl because I have problems with restless leg and other sleep issues. The hydroxyzine makes these problems worse. I can definately tell when I've missed my benadryl and it really DOES help some IC patient's out there.
              *IC-- Summer 2004; PFD--October 2005
              *Fibro--Fall 2000; CFS-- Fall 2000
              *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

              Total Abdominal Hysterectomy--adenomyosis--9\08

              04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

              Comment


              • #8
                "Antihistamines
                Some IC patients use over-the counter Benadryl to aid sleep. Benadryl may be helpful to the bladder because it helps to block mast cell secretion, which stimulates swelling in the tissues of the bladder. (IC patients should not take antihistamines that contain decongestants.)"

                comes from this webpage

                http://www.ic-network.com/iclifestyles/nov02.html
                *IC-- Summer 2004; PFD--October 2005
                *Fibro--Fall 2000; CFS-- Fall 2000
                *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                Total Abdominal Hysterectomy--adenomyosis--9\08

                04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                Comment


                • #9
                  Actually, the contents of benadryl are identical to those found in many over the counter sleep medications.

                  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


                  • #10
                    something you ate

                    it has to be something you ate


                    try drinking alot of water
                    maybe a glass w/ a tablspn of baking soda in it...

                    and think about everything you ate
                    my biggest triggers are

                    mexican - tacos
                    nuts (check your cereal)
                    soda
                    coffee
                    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


                    • #11
                      Sorry to hear you are in a non-stop flare up. Like the others said maybe if the ben. is not helping you, you can try the Atarax. Alot of IC patients get help from this med. Also have you tried Prelief. Its over the counter to help with things you should not have eaten. And like Donna also mentioned, if you have not tried or done the Cysto with Hydro maybe you can think about this. For some IC'ers it does wonders and helps alot with their IC symptoms.
                      God grant me the serinity to withstand the days ahead!!!

                      My myspace link...
                      www.myspace.com/patricia_luvs_matt


                      Patricia

                      In Memory of My Father (Lawerence) 1/25/2007

                      Procedures:
                      Interstim Sept 2001
                      1st InterStim Removal May 2005
                      2nd Interstim Implanted May 2005
                      2nd InterStim Removed March 2007
                      Hysterectomy 1999
                      Tubes Tied 1997
                      C-Section 1996


                      Me and my kids


                      Taylor (my daughter) Me and my daughter My son Cody and Taylor

                      Comment


                      • #12
                        Thanks for you comments ladies.

                        I don't think something I had back in Jan. would still be making me flare 2months later. I never have noticed much food relation. I use Perleif religously also. I also do no do caffince at all or nuts.

                        I was feeling a bit better yesterday. So I am hopefull that the Benadryl is doing something, maybe just a placebo effect so we shall see how today goes on. Thanks for the support.
                        Mom to:
                        Ella~born 10/14/03
                        Travis~born 5/8/06

                        Meds:
                        Elmiron~2pills 2X a day
                        Elavil~50mg at bedtime
                        Had great results with this for almost 2 years. Currently in a flare since 1/9/07 Trying Urised, lidocane cream, Cystoproteck and now Benadryl at night to try and stop it.

                        Comment


                        • #13
                          I should have mentioned in my post about benadryl that, in addition to being a good sleep aid, it is also helpful in dealing with such things as allergies. I keep it on hand at all times.

                          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

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