Announcement

Collapse
No announcement yet.

Please help!!Doctor is taking me off Elavil

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

  • Please help!!Doctor is taking me off Elavil

    I am in a panic... My GYN is taking me off Elavil because I have gained to much weight form it to fast..My blood pressure was really high and she said its not good to have gained so much so quick..She is uping my Cymbalta. I am scared to death Elavil is what has helped me so many times..Does anyone know of anything else that works like Elavil without the side effects of weight gain...Any advice would be welcome...

    Ronda
    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.

  • #2
    Have you asked about nortriptyline? Same class of drug (tri-cyclic anti-depressant), but rumor has it there are fewer side effects. I haven't been on it, but a lot of people here have. There's been a fair amount of discussion about it, I think on the Elavil forum.
    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


    • #3
      Rhonda, I am so sorry! Were you using it for a sleep aid, or pain relief, or both? I am on Nortriptyline and for awhile it worked just as well as the Elavil, but I took it to help me sleep without getting up 8+ times to go potty. I had to stop Elavil beacuse of the "hang over" affect. I lost ten pounds as soon as I stopped Elavil (and that is all I did) and did not gain any weight on Nortriptyline. After a few months on it, for whatever reason, it wasn't as effective in helping me sleep, so I take Valium with it at night time. That helps with my pain and helps me sleep better, getting up only 2 times or so. I know many people here take sleep meds so they aren't getting up all night, but I have to be able to get up with small children. It helps a little with my pain, but I have alot of PFD related issues and need Valium and Vicadin sometimes as well.

      I hope you find something that helps you soon!
      Rachel
      DX's:
      IC; PFD; possible Fibromyalgia; IBS;

      Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

      I've Tried:
      three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
      Currently using:
      Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
      Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
      I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

      Comment


      • #4
        ((((((((hugs)))))) well your doctor is looking out for your best interest.. maybe you can get on elmiron
        'The will of God will never take you where the Grace of God will not protect you.'

        Comment


        • #5
          Elavil raised my blood pressure to dangerous levels. It's one of the potential side effects. It may take a while to find a substitute, but taking it could be dangerous for you --- it was for me.

          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


          • #6
            re

            your fears are not unfounded.

            i was on elmiron & elavil.
            i quit elmiron due to hair loss
            i did very well...with the aloe vera pills & elavil
            great actually for 8 weeks

            after 8 weeks..my hair was still comming out.
            i freaked out...and quit the elavil too.
            the hair loss slowed.
            but by day 6 of being off elavil...the frequency picked up.
            not a flare..just more frequent.
            i went back on the elavil

            the frequency stopped....the hair loss returned.
            the hair loss got so bad..i stopped the elavil again.
            that was 8 days ago.
            and i have been flaring ever since.
            (im sure..in part by the stress of the hairloss)


            MY game plan:
            ** my doc called in ATARAX.
            (antihistamine..but has antiinflamtory effects on bladder)
            its only been 4 days. so i cant say for sure if it will work.


            i took two elavil 25mg each last night to sleep...as i had been awake for 6 days with the frequency

            my plan is to cut the elavil in half..and see if i can keep my bladder & hair happy...if that doesn't work..i will take elavil AS NEEDED.

            I would recommend for you.
            to beg for a smaller dose of elavil..and promise the doc you will loose weight.

            but i will let you know...about the atarax
            i just liked the elavil..because it helped me sleep.
            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
              I take Elavil for pain and throbbing feeling in my clitoris..<sorry to be blunt.. I just pray that that feeling does not come back.. It was driving me crazy..Thanks for all the advice and replys..
              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


              • #8
                I know what you mean about the wait gain Ronda, I started Elavil on 4/18/07 and I have already gained 5lbs! I just seem to want to eat all the time and want to eat anything sweet I can find. I'm going to try to really cut back because Elavil has helped so much I would freak if anybody tried to take me off of it.
                Christine



                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

                Comment


                • #9
                  Ronda,

                  I am so sorry that you are losing something that has worked so well for you. I hate that the things that help always seem to have some horrible side effect!

                  Since Elavil is thought to help with nerve related pain, (kind of like Cymbalta is), that is probobly why she chose that one to replace it. I would give the Cymbalta a try at the higher dose. Lots of people really respond to it. But, if you dont, then I think I would try the neuropathic meds next. Some of those, (Like Neurontin and Lyrica), also have the weight gain side effect. However, there are a few that actually have the side effect of weight LOSS! Topamax might be a good med to try since it is an antidepressant but it is also used for pain since it is thought to work like some of the neuropathic meds too. I am not sure if it is classified as an antidepressant or a neuropathic med, or a seizure med. But, it is given to people for seizures, headaches, depression, neuropathic pain, and for several other things. You might want to look it up and see what you think.

                  I hope and pray that you find something that works for you. I hate that you found Elavil and it helped and now it is being taken away. I do agree that you might ask about trying a lower dose of it to see if it helps. I take 10mg at bedtime and my Dr. also r/xed the Cymbalta with it. The Cymbalta was 60mg 2x a day. I also was taking Neurontin with it 900 mg 3 x a day. (I quit the Cymbalta b/c it wasnt helping my pain and I no longer needed it for depression.) Anway, please let us know what your Dr. says and how the new meds work out for you.

                  Sending hugs to you,
                  Amy

                  Comment


                  • #10
                    Amy-how do you function on sooo much sleepy meds a day?? I've tried them all--I can't get past a low dose because of sleepyness. I've tried them all for at least 4-8 wks. (not all at the same time ) It's funny that I have a low tolerance for sleepy meds but a high tolerance for pain meds---you'd think I'd swing one way or another??
                    I'm starting nortriptyline/atarax each 25mg. Haven't taken these 2 together yet. Elavil made me gain 8lbs the first time I tried it and 8lbs the 2nd. I'm told the nortriptyline won't do that. I'm 5' tall and any extra poundage really shows. I dream of being back to pre-baby pre-disease weight. I want to know what meds "help" you lose weight?? Besides flagyl--I've actually lost 4lbs while on it--the hard way.

                    Comment


                    • #11
                      Hey there lee lee, i had to stop elavil too because it was screwing with my anger/moods. the doc put me on zoloft, which i have only been on for aw eek or so, and we have had to tweak the dosage, but it seems to be helping. you may want to try it??? my doc also said that wellbutrin is sometimes helpful too. i have not been on that one myself


                      Jessica
                      diagnosed with IC in 10/2006

                      Current meds:
                      Elmiron, 100 mg twice a day
                      Kyolic Garlic, 2-4 pills per day
                      Zoloft, 25mg per day
                      Aviane BC
                      Multivitamin and Glucosamine (as needed)

                      I will not allow IC to control me or my life!

                      Comment


                      • #12
                        Thanks for all the replys..
                        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


                        • #13
                          Rhonda,

                          How are you doing since the Elavil was pulled? I hope the pain didn't return for you!
                          [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                          [

                          Comment

                          Working...
                          X