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  • Elmiron and shakiness

    Does anyone feel shaky, or kinda of hypoglycemic after taking elmiron?
    In the morning when I take it, I usually take it with a cheesestick to avoid upset stomach, then I shower etc. I have noticed the last few days I feel quite shaky and weak after about an hour to hour and a half after taking it. Kind of that hypoglycemic feeling I get if I don't eat protein for breakfast. I feel weak, shaky etc. I eat and then a couple hours later it subsides. I drink coffee 1/2 caf too, but have always drank coffee in the morning.

    Just wondering if any of you have felt this?............
    Cindi


    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    Great treatment flowchart on page 19 of the pdf

  • #2
    i was on lithium and cybolta the same time with elmiron i shook all over went off lithium and elmiron and cybalta. shakes quit they say lithium is well known for shaking.
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    • #3
      don't know!

      I feel generally off, but I have more palpitations and I don't know if it is elmiron. I just don't feel so well in addition to the regular bladder stuff. It could be elmiron or it could not be and it's too subtle to explain to a doctor (though I have had my heart checked out and I almost don't believe that what they say is normal, because I don't feel normal).
      I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

      Comment


      • #4
        Cindi I get the same problem as you and I have been on Elmiron for years. I wake up early. Take my elmiron, go onto my computer for too long but when I get up from the chair I feel weak all over. I have terrible fatigue all day no matter what I eat. Elmiron has helped me greatly so I can't stop taking it. I was found to be very low in "B" & "D" and I am working on that. You might want to ask your Doctor to do a complete blood panel on you to see if something is low that you are unaware of. Also share with the Doctor about your condition. Hope you feel better soon. Hugs, Ziggy

        Comment


        • #5
          Originally posted by Zygala87 View Post
          Cindi I get the same problem as you and I have been on Elmiron for years. I wake up early. Take my elmiron, go onto my computer for too long but when I get up from the chair I feel weak all over. I have terrible fatigue all day no matter what I eat. Elmiron has helped me greatly so I can't stop taking it. I was found to be very low in "B" & "D" and I am working on that. You might want to ask your Doctor to do a complete blood panel on you to see if something is low that you are unaware of. Also share with the Doctor about your condition. Hope you feel better soon. Hugs, Ziggy
          Thanks, glad to hear I'm not alone. I think I will do a little experiment this morning. I will eat first and then take it 2 hrs after and see if I get that same feeling. I'll post later today. I think its something about taking it with an already maybe lower blood sugar in the morning since nothing has been eaten since the night before.

          I had a full blood workup last fall and my D was fine. I started taking a D supplement a few months ago though since in Chicago I can go months without getting outside. I'm assuming my B was ok too as I take a multi every day.
          Cindi


          Gelnique for frequency/urgency - works great
          Macrobid after sex
          Prilosec, continuous birth control pills
          synthroid .088mg, mucinex-d, restasis

          Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

          Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

          IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
          AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
          AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
          Great treatment flowchart on page 19 of the pdf

          Comment


          • #6
            Bob too was shakey sometimes when he took Elmiron. as well. Maybe your doc can help with that, changing your times of dosage around a bit or at least speak with your pharmacist. Don't give up on it if that is your side effect, just be careful you don't fall and hurt yourself with that dizzy feeling. Take care. Jill, wife of Bob

            Comment


            • #7
              So I'm glad I did my "little" experiment. I ate a good sized breakfast, egg whites, cheese, english muffin, waited two hours and took the pill. Its definitely the elmiron and not the coffee. It wasn't as bad as taking it before eating but it didn't change the overall effect of feeling a little hyper, like I've had too much caffeine or something (which I haven't). It actually reminds me of when I first started synthroid for my thyroid and it did the same thing. I think its giving me slight heart palpitations too. No other side effects though for me. No diarhea or upset stomach as long as I take the omeprazole an hour or two before each dose.
              I am not going to quit taking it but it is nice to know what is causing these effects. It is the only new drug I'm on. My doc prescribed a different OAB med but I'm still taking the vesicare because otherwise if you start too many meds you can't tell whats causing what.
              Its funny because I don't see it in any of the literature (these side effects) yet if I look online for user reviews some people do seem to have these effects from it. It seems MOST medicines do this to me, rev me up, not sure why.

              I'm feeling REALLY hopeful the elmiron is going to solve most of my bladder problems! Can't hurt to be optimistic right?
              Cindi


              Gelnique for frequency/urgency - works great
              Macrobid after sex
              Prilosec, continuous birth control pills
              synthroid .088mg, mucinex-d, restasis

              Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

              Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

              IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
              AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
              AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
              Great treatment flowchart on page 19 of the pdf

              Comment


              • #8
                yes elmiron causes shakyness and heart palpitataions

                I notice that if I take it too late at nite and try to go to bed I start getting heart palpitations. Also I am one of the people that take it with my full meal. Of course by doing this it took me longer for it to work, I just cant take it alone or 2 hrs after or even with a small amount of food. The only thing is that by taking it with full meal I HAVE to take tums cause I get heart burn so bad it feels like I am having a heart attack. When I first started doing the full meal thing I went to the ER cause I thought I was having chest pain turned out it was the elmiron not my heart and I had to take pepcid but then switched to tums cause pepcid and zantac etc really isnt good long term.

                Comment


                • #9
                  Well unfortunately I've got GERD so have been taking omeprazole daily for about 20 years. I take the lowest possible dose I can but I've had to increase it a little with the elmiron. Hopefully it will be worth it.

                  Its good to know I am not the only one noticing these effects so thanks for responding. Sometimes I think I am the only one who gets every little side effect possible on most meds.
                  Cindi


                  Gelnique for frequency/urgency - works great
                  Macrobid after sex
                  Prilosec, continuous birth control pills
                  synthroid .088mg, mucinex-d, restasis

                  Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                  Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                  IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                  AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                  AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                  Great treatment flowchart on page 19 of the pdf

                  Comment


                  • #10
                    heart palpitations, elmiron?

                    You know I stopped elmiron about 6 weeks ago for about 7 or 9 days and I still had heart palpitations. I had them before I started elmiron, just not as bad. I wonder if the elmiron sort of exasperated it to the point that even stopping it for that long was not enough time to calm them down. But I started up the elmiron after that. So I've been on it a total of about 4 months and I am having a huge flare so it hasn't helped yet for me.

                    I also was getting Gerd or a bubble feeling at the top of my stomach, so for a few days when I stopped the elmiron, I would take Gaviscon at night and that helped the indigestion which I think was caused by taking supplement pills (vitamins, calcium, etc.) on top of a snack and then lying down. Can't do that, so now I don't eat before bed which I have to do for awhile anyway to take the elmiron. Sorry I am rambling, my bladder hurts, my heart is irregular and my dog is very sick at the vets which will be thousands of dollars and I had the stomach flu and was throwing up a few days ago. VENT VENT. SORRY.
                    I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                    Comment


                    • #11
                      purple- I'm sorry you're having a bad flare and you were sick AND your dog is in the vet. That stinks. My doc told me to go off of the elmiron after 3 months but I can see from the posts here that its worth trying for 6 months. I've seem some people have improvement within a month?

                      I normally have a benign premature heart beat. I feel it maybe once a day or less. Some medicines will make it worse. The elmiron and it seems everything else will give me the palpitations but only some will make that worse. If that gets worse it freaks me out because it feels like my heart is rolling around in my chest. I had the treadmill test done and luckily it happened while I was walking and they said no big deal, not to worry but it is a little scarey.

                      Took a 1/4 of my hubbys amitriptyline last night. IT did not wire me, wow I slept finally really well though am groggy this morn, I think I've read its often used for insomnia, now I know why. Wll email my doc and ask for the lowest dose of that.

                      Vet bills suck. We had a cat and she got sick last summer and went to the vet and eventually over a couple days they had to put her down. It was really expensive too. Nothing they did helped her and we of course still had to pay the huge bill even though everything failed. Now we have a little yorkie.

                      We're from Seattle too, have been gone quite a while but my family is still there. I miss the mild weather and the early spring. I talked to my parents the other night and they said the crocus have already bloomed and the daffodils are mostly up.
                      Cindi


                      Gelnique for frequency/urgency - works great
                      Macrobid after sex
                      Prilosec, continuous birth control pills
                      synthroid .088mg, mucinex-d, restasis

                      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                      Great treatment flowchart on page 19 of the pdf

                      Comment


                      • #12
                        to cmclien

                        a little off the topic of thread but amitriptyline can definitely cause heart palpitations so be careful with that!

                        My flare is better, dog is back from vets on heavy antibiotics and awaiting a blood test result for leptosporosis which killed a dog down the block, but since my dogs liver/kidney is OK then probably doesn't have that. Poor dog was holding in all this pee at the vets, cause boy did he pee when he came out the door! I'm always worried about the dog having to go out and pee if its been a few hours, - my husband has to remind me that he is not like me, that he can hold it. I don't know what a normal bladder is anymore.

                        I really have to resist some teas which really can cause me to flare. If elmiron doesn't help with being able to drink tea and coffee and wine then forget it, but hopefully I can continue elmiron a whole year to see if it works.

                        Thanks!
                        I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                        Comment


                        • #13
                          Have you tried the rooibus teas? There is another thread recently about what to drink and I posted there all about those teas. They won't cause flares, I can drink them all day long unless they have cinnamon then I have to be a little more careful. They are from a different plant then the one that black and green tea come from. They usually come flavored (they have them for sale here) and are sweeter in general. Also celestial seasonings makes a honey chamomile tea thats safe and also a peppermint thats fine too.

                          Up until last fall I could drink coffee. Tea (black/green) and cocoa bothered me more. I still don't know what started the worstening of my symptoms. I think maybe a 10 day dose of antibiotics not for my bladder but for a sinus infection. It hasn't gotten better though watching my diet of course helps.
                          Cindi


                          Gelnique for frequency/urgency - works great
                          Macrobid after sex
                          Prilosec, continuous birth control pills
                          synthroid .088mg, mucinex-d, restasis

                          Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                          Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                          IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                          AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                          AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                          Great treatment flowchart on page 19 of the pdf

                          Comment

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