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Is It Worth It???

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  • Is It Worth It???

    I can't take it anymore!!! The Elavil !!! I can't keep gaining weight... i thought at first it was worth it... gain a little weight, have the bladder more relaxed and less pain... but i feel so gross.. i can't control my "snacking" and i can't keep gaining weight like cant be healthy...??but i can't handle the pain either..!! I am so fusterated... is it worth it??

  • #2
    I would talk to your dr about it, from others have said there are other antidepressants that are in the same class as Elavil but with less side effects. Maybe one of those would work better for you.

    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus


    • #3
      I am having the same problem...The elavil has worked so good for me and my bladder but my weight has gotten out of control..My GYN wants me to quit it.. I have reduced it to half right now and can tell my bladder is getting mad.. I cannot keep gaining weight though because its affecting my blood pressure..She increased my Cymbalta, but I dont think thats helping..Also I couldnt sleep last night and I am very grouchy today which is not good..So I completely understand your frustration...Let me know what you decide and I will keep you informed if my GYN puts me on anything else that works...


      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:

      Diet Reference Sheet:

      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.


      • #4
        Thanks, and I will keep you posted. Sorry to sound so negative..i dont mean too... it is just very fusterating..but it is great that it helps with pain.. so it is a good thing...just .... fusterating...
        And i think i will talk to my Dr. about different options..


        • #5
          I've just tried taking elavil and I don't think I can keep doing it. It seems to create a terrible sense of anxiety for me and is also contributing to my retention. I had so hoped it would work. I failed at elmion as well so I'm feeling a bit defeated right now.


          • #6
            Aw, sorry to hear your feeling a little defeated.. but dont! Theres something out there for everyone...Elmiron didn't work for me either..the Elavil helped me sleep and relax.. but not only am i gaining weight its not really doing its job anymore..! They've put me on gabapentin.. i think its some kind of nerve blocker.. Have you tried something like that before?


            • #7
              Thanks Melissa. I've got a uro appointment on the 21st. I'll talk to them then about other options. Glad that that they have some other options for you. I know others have had success with neurontin (sp?). It's supposedly similar, but with less side affects.


              • #8
                I got switched from elavil to nortryptiline, and it's making a lot of difference. On the elavil I slept all the time and had constant food cravings. On the nortryptiline, I am much less sleepy, and although my appetite seems kind of increased, there are no specific cravings. So it's much easier to resist.

                Nortryptlinine is a metabolite of elavil (amitryptiline) -- it is one of the substances that elavil breaks down into in the body. It is definitely helping me with pain and frequency. I recommend a trial of this to anyone having trouble with elavil. I'm sure it won't help everyone, but it is bound to help some people.
                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


                • #9
                  Thanks for the advice! I will def ask my Uro about this! Anything is worth trying! Can you go through "with drawl" symptoms from not taking the Elavil? This is my 2nd day not taking it.. and i feel...groggy with a little headache?


                  • #10
                    Have you tried cymbalta? It worked for me while I was on it.

                    I'm frustrated about my weight gain. I've gained so much since I came off all my meds. I can't seem to stop eating. Sometimes I even feel full, and still have the overwhelming desire to eat. I am absolutely huge now!

                    I feel for you.