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Elmiron and Joint Pain?

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  • Elmiron and Joint Pain?

    I have been on Elmiron 6 weeks. Can Elmiron cause joint pain? If so, should you stop taking it?

    I began to have joint pain in my hand and when I told my doctor he said stop the Elmiron for two weeks then start it again.

    I'm scared to death to stop Elmiron! It has help me so much and I'm finally getting better! Why would he want me to stop my Elmiron? I spoke with his nurse and was unable to ask him directly.

    Does anyone know anything about Elmiron and Joint Pain? What could Elmiron possible do to my joints and would it be worse than the IC?

    The pain bladder was horrible (and everything that goes with it). So afraid that pain will come back if I stop Elmiron.

    What to do...

  • #2
    I also had joint/muscular pain and fatique, along with the abdominal pain of the IC. I was finally referred to a Rheumatologist and was diagnosed with having Lyme Disease. Your two problems may not be related - did you have the joint pain prior to the Elmiron? Is it only one hand? See if you can get a second opinion - it made a big difference for me (although the two years of antibiotics have not wiped out the Lyme, I am better able to deal with it just by understanding what I have)


    • #3
      Thank you for responding.

      I had the joint pain in my left knee and hip prior to Elmiron. I did not say anything until it happened to my left hand. It's disabling when you cannot lift files at work, fastin your seat belt, open jars, etc.

      My hand is now getting better. It is still in hip and knee. Maybe I'm just getting old. I guess I should ask another doctor (rhuma?) before I stop Elmiron. Like you say they may not be related.

      Thanks agian for your suggestion and help.


      • #4
        When I have flare ups, I have pain all the way down my left leg, but my ankle and foot are the worst. Is anyone else having similar symptoms?

        Our Scars remind us that the past was real...

        Are we there yet? Are we there yet? Are we there yet?


        • #5
          All of my pain has always been right sided. Right lower back pain, right hip pain, rt leg pain. Even with my endometriosis, my rt ovary hurts. With flare ups it is even worse,
          like down my whole rt leg. Isn't that weird?


          • #6
            I had joint pain long before my IC dx and was diagnosed with Fibromyalgia which is appears to be fairly common in Ic patients and can be worsened by stress. But fibro. pain is usually pretty wide spread not just in your hands but for me it did strictly start in my knees.When I have an Ic flare I can get pain that usually goes down my left leg even into my ankle and foot.
            I know how you feel about stopping the Elmiron you feel like you are just getting back up to speed and someone wants to risk pulling the rug out from under you!! They had me stop it before a surgery back in march for 10 days and I ended up in a flare (could have been the surgery,the Anesthesia or the lack of Elmiron or all three who knows.) I've never heard that Elmiron was associated with joint pain. Hang in there--julie


            • #7
              Hmm...I have pain in my arms, wrists and hands, shoulders and back.. It feels like when say you work out at the gym lifting weights..the next day you have that achy feeling. Is this joint pain? I only had it in the last year...


              • #8
                Fibromyalgia for me is alot like a pain after working out.Actually when I was first dx'd they thought I had hurt my knees "over training"--it can also look alot like Lyme disease so you should be checked for that too. Do you wake up after a nights sleep feeling exhausted thats a sign as well---of course after a night of getting up to pee every hour who gets "restorative sleep"????-julie


                • #9
                  Yes I am always tired...and achy like I have the flu...I am so sick of telling people because everyone acts like Im not sick....


                  • #10
                    wow I have this problem too its in my lert ankle and hip,my right elbow and my left wrist...I thought I was losing it...


                    • #11
                      That sounds like arthritis. I started having joint pain on my hands as well since last year and went to a rhumatologist recently and was told it may very well be osteo-arthritis. I was prescribed celebrex. I haven't started taking it yet but I'll let you know if it helps. I'm almost certain that it has nothing to do with elmiron.



                      • #12
                        joint/muscle pain with elmiron??

                        Hi I am new to this forum. I have been diagnosed with IC for about 3 months now and I have also been on Elmiron and receiving Elmiron/sodium bicarb/lidocaine instills as well and I started having this weird muscular/tendon/joint pain after I started taking the medication and it is primarily on my right side. It has subsided a little bit now but I still have pain in my right, knee, hip, ankles and feet. It feels like this is a very bizarre phenomenon seeing as the doctor could not really attribute it to anything. It gets worse when I increase physical activity. I don't know for sure if the Elmiron is to blame but it sure seems like a strange coincidence.
                        I am only 24 years old and so tired and in so much pain everyday from burning and stabbing bladder and vaginal pain. I also have severe pain in lower back and lower extremities, predominent on right side.
                        ~IC symptoms started 3/06
                        ~Dx: 5/06
                        ~Dx: Vulvodynia

                        Current medications for IC and Vulvodynia:
                        Lorazepam 1mg/night
                        trying homeopathic soon but scared out of my mind

                        Medications tried but failed miserably/made me worse:
                        Elmiron/sodium bicarb/lidocaine bladder instills
                        This medication stuff is a load of BS


                        • #13
                          to carolyneo

                          the issues you are describing...feeling like you have the flu even though you don't, muscles stiffness even though you haven't worked out, definitely sound like fibro. it typically runs hand in hand with IC in many cases. i would check with your doc and see if they will refer you to a good rheumatologist.

                          hang in there.


                          • #14
                            I am experiencing joint pain, achiness, and morning stiffness. Its fairly new and so is taking Elmiron (5 months). I work out three times a week (weight training) and recently started running/jogging 3 km 3 times a week. I thought it would help but I seem to be worse. I am going to check with my uro for a connection.

                            I will post if I hear anything about Elmiron and joint pain.


                            • #15
                              Joint pain also

                              This thing about joint pain and Elmiron keeps coming up ......I felt that way after I started Elmiron. I've been taking one pill a day since last April. If I take more than that my IBS symptoms kick in and I have diarhea. I take the Elmiron out of the capsule in a little water. Every time I start to think Elmiron is not helping , then I start to feel better for a while. Then if I start my period or get sisck or have a family crisis I start having more symptoms. I can't decide whether to start something else- like a natural product. This is one weird disease.