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  • Has it helped

    I would love some encouraging news.... Anyone out there helped by Elmiron? My dr. believes that it can send people into remission.

  • #2
    I started Elmiron 11 weeks ago tomorrow. I take 3x daily 100mg each on an empty stomach. I have had no side affects and have started to feel really good! I hope it will continue and hope and pray it works for you..
    ~~Pamj~~
    God brought me to it, He will bring me through it!!!

    Diagnosed 2003
    by cysto/hydro
    Elmiron took almost a year- made me sick, caused diarrhea
    Pyridium -Made me sick
    Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
    Tried DMSO instill- had 5 out of 6
    Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
    Cysto/hydro April 6th 2011-- on expansion only hold one cup
    IBS/ IC
    High blood pressure meds and Crestor
    Metformin (prediabetic)
    Sinequan (depression)

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    • #3
      Thanks for responding. I'm only on week 4. Glad to hear that you feel good. How early in the treatment did you get results?

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      • #4
        I have been on Elmiron since July. I take 3 x 100mg a day. I am feeling really good. I definately notice a big difference. But I also take Atarax, Detrol LA, and Elavil. So I think it is the combo that helped me.

        Cali
        Cali

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        • #5
          Dawn,
          I started to feel better around week 5.. My uro was surprized that I was feeling good so quick.. I do not take anything else with it. Stress in my life had let up as well at that time so maybe that is part of it. I do take a lot of water with it and always on a empty stomach..
          ~~Pamj~~
          God brought me to it, He will bring me through it!!!

          Diagnosed 2003
          by cysto/hydro
          Elmiron took almost a year- made me sick, caused diarrhea
          Pyridium -Made me sick
          Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
          Tried DMSO instill- had 5 out of 6
          Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
          Cysto/hydro April 6th 2011-- on expansion only hold one cup
          IBS/ IC
          High blood pressure meds and Crestor
          Metformin (prediabetic)
          Sinequan (depression)

          Comment


          • #6
            i started taking elimron grouphug june 2001 i couldnt tell it was helping me until i stopped taking it then i knew it was my doctor also look at my bladder after being on elimron and said it looked alot better but still i didn't feel it was helping me enough so now i take the heparin at home one to three times a day threw a cath I can tell that has helped.
            i have heard many people going into remission with elimron good luck i pray it works for you.
            Medicine taken daily or as needed:
            1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
            2. MS.Cotin 100mg 3x daily
            3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
            4. Fentanyl 100 mg Change every 48hrs.
            5. Gentamicin 80mg install after each rescue treatment
            5 Leviquin 500mg self start as needed.
            6. Klonopin 1 or 2 daily as needed.
            7. Prosed/DS as 1 every 6hrs as needed.





            I have IC, but IC doesn't have me anymore!

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            • #7
              I've been on Elmiron since '98. My pain is much less, I think because I now have a bladder lining to protect me!
              IC & fibromyalgia since ~'77. Osteoarthritis since ~'88. Idiopathic Thrombocytopenia Purpura (autoimmune blood disease) since '96. IBS for who knows how long. Interstim implant 2/04, revised 6/06, replaced 11/12 & again in 9/17. Antibodies to thyroid since at least '92 (finally diagnosed & treated 1/06). Asthma & vocal cord dysfunction 12/06. Hypoglycemia '07. Perimenopausal at 37, menopause at 45. Pituitary & adrenal failure. Osteopenia. Grade 3 sacral fracture by S3-S4 at age 12, healed 14mm out of place.

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              • #8
                Thanks! Was anyone helped with urethral pain? That's my main problem.

                Comment


                • #9
                  Hi Dawn.

                  Most of my pain is/was uretheral. I have been on Elmiron for 2 years now and it has helped me a great deal. I take nothing else but I must stick to a strict diet. If I slip up and eat a NoNo I will feel it. My flares however are not as severe since being on Elmiron. I also make sure to take it religiously and on an empty stomach. I don't ever want to mess up and have the BE (before Elmiron) pains again.

                  Good luck. I truly hope the Elmiron helps you too.
                  Life is fragile. Handle with Prayer.

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                  • #10
                    5/02 Pain started. Put through 5 antibotics.
                    8/03 Uro did cystoscopy, diagnosis IC.
                    10/03 Started Elmiron & elavil. Strict with diet.
                    11/03 Started DMSO treatments.
                    12/03 Pain lifting till 5th week of DMSO. Got infection. Took antibiotic for 1 week. Completed last DMSO after infection cleared. By mid Dec. pain free!
                    1/04 No pain, unless I sit to long, or don't relieve myself right away. Ya, no pain!

                    No side effects at all from Elmiron, another ya!

                    Most important of all, I ask God for a healing. If it be through medication, okay, I'll take it.

                    Hope this helps someone.

                    Comment


                    • #11
                      I've been on Elmiron for almost 2 months and it has helped me tremendously! I get little flares when Ieat something bad but not not as bad as it used to be. Now the only time I flare bad is during my period.

                      It sounds like its starting to help you too! YAY!!

                      Erin
                      [email protected]

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                      • #12
                        I've been on Elmiron since 1 month and can tell it is already helping...a lot. I also stick to my diet and I'm feeling better everyday! wink
                        Tilly

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                        • #13
                          Thank you to everyone responding. hi

                          Tomorrow will make 2 weeks on it & I've been afraid to hope too much... (but I'm secretly really hoping anyway!!!)
                          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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                          • #14
                            I am getting ready to start my third month of Elimron. I feel so much better, than I did without it. I have a lot more energy. It is a beautiful thing!! Stick to it.

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                            • #15
                              Dawn,
                              I have been on Elmiron since June 13.My first uro had me on 100 twice a day. My second uro (who is on the IC Assoc. board and does research) upped the dosage to 200mg. twice a day for a total of 400. After a week of double the med, I woke up and realized that my pain was gone. It happened just like my first uro said-you just realize one day that you aren't burning. My new uro told me I could also up my Elavil to 75 from 25mg. a day, but I can't do that and teach school. He also took me off Atarax as I showed no mast cells. The researcher told me Elmiron does not have be taken on an empty stomach. He told me to take my pills, take a shower, then eat breakfast. Good luck, Rinnie

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