Announcement

Collapse
No announcement yet.

What might replace Elmiron?

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

  • What might replace Elmiron?

    Elmiron has worked well for me. I do think I have a slight coating on my bladder. I have awful fatigue and kind of blame Elmiron. If I were to go off of it what might take it's place? Perhaps someone here has done what I'm thinking of doing and found something that worked for them. Hugs, Ziggy

  • #2
    I would maybe try cystoprotek. I have been on if for about 4 days and I can already tell a difference. I may have a mild case of it though. I still stay away from all the acid foods but may have a treat of my favorite iced coffee once a week or something. I would try to stick with elmiron if the side effect of fatigue is not all that bad. I tried elmiron and it seem to have made me worse. I had a flare from it so i decided to try the natural way first. How long have you been on the elmiron?
    _____________________________________________

    Comment


    • #3
      cystoprotek works for me

      You might give Cystoprotek a try. It is working for me really well. Due to some crazy life circumstances, I stopped taking my dose like I should in January. I could tell a major difference in the number and intensity of flares. Needless to say, I'm taking it on a regular schedule now. The only side effect I've had is a little gastro upset, but that settles down after a couple of weeks. PS I started taking Cystoprotek in late Sept.'10.

      Comment


      • #4
        Hi,

        Uracyst would also be a good choice. It seems like in many cases, even better. I've talked to several who have responded to Elmiron-the individuals I've spoken to all have seemed to respond to Uracyst too. I wish it was FDA approved here. At least doctors here can still prescribe it and patients can still order it themselves too:-)

        Jill
        "Where there is hope there can be faith. Where there is faith, miracles can occur."

        Comment


        • #5
          Uracyst is chondroitin sulfate, that's all there is to it! I can't afford Elmiron, costs me $500 so taking the natural route.

          I ordered pure chondroitin sulfate, n-acetyl glucosamine, MSM powder, and gotu kola (ingredient in Bladder-Q) from Beyond a Century. I'll keep you girls posted if this combo works.

          Also, I've been taking Cystoprotek and Claritin at night, it seems to help but only a little. Of course, following the IC diet strictly and managing stress helps too.
          Dg. with IC 2/15/10

          Other conditions: depression, ADHD, lactose intolerance, celiac disease, chronic fatigue syndrome, IBS-C.

          Medications I'm on: Vyvanse 70mg, Xanax 1 mg as needed, Wellbutrin XL 150 mg, Vicodin 5/500 as needed for pain, Microgestin 1/20 continuously.

          Supplements I'm taking: Chondroitin Sulfate, N-acetyl-glucosamine, MSM 3gr/day, Pancreatin, B-5, Ester-C, and marshmallow root tea

          Comment


          • #6
            I wouldnt stop

            Originally posted by Zygala87 View Post
            Elmiron has worked well for me. I do think I have a slight coating on my bladder. I have awful fatigue and kind of blame Elmiron. If I were to go off of it what might take it's place? Perhaps someone here has done what I'm thinking of doing and found something that worked for them. Hugs, Ziggy
            Ziggy, I wouldn't stop if I was you. You said right here it is working for you and would be so sad if you went off and then had major symptoms. I really don't think it is known for fatigue. Not to pry but didn't you say you are low in B vit? or iron? I can't remember but that could be causing your fatigue. Look at all of your meds, could be something else. The main side effects of elmiron are stomach upset similar to cystoprotek. I personally have taken cystoprotek for the last year and its not the same as elmiron (for me anyways). I'm glad it works for others but they are not the same.

            A suggestion would be to add cystoprotek to your regimen and see how you feel and maybe cut back on the elmiron without stopping use of it.....
            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


            • #7
              Hi 425runner,

              The nice thing about Uracyst though is that it is directly coating the bladder full strength. It literally latches on to the "leaky" areas creating a temporary protective layer.....

              Jill:-)
              "Where there is hope there can be faith. Where there is faith, miracles can occur."

              Comment


              • #8
                Originally posted by jvr View Post
                Hi,

                Uracyst would also be a good choice. It seems like in many cases, even better. I've talked to several who have responded to Elmiron-the individuals I've spoken to all have seemed to respond to Uracyst too. I wish it was FDA approved here. At least doctors here can still prescribe it and patients can still order it themselves too:-)
                Jill
                Just so you know the same ingredient is already in cystoprotek: 2 tablets is 300mg chondroitin sulphate and uracyst is 400mg CS.
                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


                • #9
                  Hi Cindi,

                  I see your point, but Uracyst is being directly instilled on your bladder tissues. Hard to say, but I wonder when you ingest the pills, what percentage does your body actually absorb? I would still think the instill would still be more concentrated in the end. We will have to agree to disagree here:-) This is coming from someone that is helped by Cystoprotek, believe it or not....

                  Jill
                  "Where there is hope there can be faith. Where there is faith, miracles can occur."

                  Comment


                  • #10
                    Thank you for all that gave me advice. I am low in "B" & "D" but have been taking them for some time now and the "wet rag" feeling is still with me. It seems worse two hours after I take Elmiron in the morning. At night while watching TV I take it again but since I'm sitting in a chair relaxed it does not bother me so much. When I shop for groceries even with my Husband's help, I'm so shakey and wiped out I can barely get them put away. Then I collapse into my chair. My day is done! Dust bunnies are breeding under my beds. I run ads for a house cleaner and get no answers. My house is too big and we would like to down-size but in todays market, that is impossible. I've been on Elmiron for about four years or more. I think I need to count my Blessings and get over myself. So many people on here have no relief at all. Hugs to everyone, Ziggy

                    Comment


                    • #11
                      Ziggy, have you had your blood sugar levels checked recently? You sound like me when my blood sugar dips, which doesn't happen often since I was diagnosed as diabetic and watch my diet closer. That weak, shaky feeling used to happen to me two to four hours after a meal.

                      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


                      • #12
                        Originally posted by jvr View Post
                        Hi Cindi,

                        I see your point, but Uracyst is being directly instilled on your bladder tissues. Hard to say, but I wonder when you ingest the pills, what percentage does your body actually absorb? I would still think the instill would still be more concentrated in the end. We will have to agree to disagree here:-) This is coming from someone that is helped by Cystoprotek, believe it or not....Jill
                        Hi, I didn't realize it was used as an instill so yes I totally agree with you that more gets to the bladder lining that way. Same with the instilled elmiron and so on. My UG highly recommends instills but I'm not ready to go there until I try the elmiron for 6 months.

                        And I know cystoprotek does help some people, I just haven't been one of them

                        Seems like the elmiron is starting to work already for me
                        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


                        • #13
                          Originally posted by ICNDonna View Post
                          Ziggy, have you had your blood sugar levels checked recently? You sound like me when my blood sugar dips, which doesn't happen often since I was diagnosed as diabetic and watch my diet closer. That weak, shaky feeling used to happen to me two to four hours after a meal.Donna
                          Ziggy, I totally agree with this. If I don't eat a super high protein breakfast I get the shakes, sweat some, feel weak like I can barely move. I eat a little bit of carbs but my main food for breakfast is protein. My blood sugars are normal but haven't done the fasting one in years. Changing my diet this way makes a huge difference.
                          I do think elmiron tends to make that feeling worse in the morning. I make sure I eat that high protein breakfast within an hour of taking it. For whatever reason it doesn't bother me at night.
                          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


                          • #14
                            My uro Dr. from several years back told me that Algonot was "the poor mans Elmiron". I used it for years and it helped. I stopped taking it because it too is rather expensive and I couldn't afford to re-order for a time and then just neglected to do so when I had the money. I need to order some right now. Can't take Elmiron in any fashion. If you can take it, you are one of the lucky ones. Had an instill Thursday with 1/2 the dose of Elmiron hoping it would not make me sick like it does orally..or at least that the side effects would be tolerable. Wrong! It made me very sick. Ironically, my bladder feels better today than it has in weeks. Unfortunately the side effect for me aren't acceptable. I'm allergic to most everything on the planet...Elmiron too. I guess I better order my Algonot!

                            I hope you feel better soon..very soon!
                            I'm Perfectly Imperfect and Praying for Remission

                            Comment

                            Working...
                            X