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  • Alternative to Elmiron????

    Hi Everyone,

    I have recently been informed I may not be able to continue with my current perscription of 100mg of Elmiron 3 times a day as it's too expensive!
    I have been on it for just over a year along with 30mg of Amitriptyline in the evening and following a srtict IC diet, and I have definitely seen an improvement.
    I'm not really sure where to go from here?!
    Are there any other medications which do a similar job to Elmiron? Or any new medications worth trying?!
    Any suggestions or feedback would really be appreciated!
    (I live in the UK)
    Thank You!

  • #2
    Wow, it sounds like you are doing so good. I don't think there are any substitutes for elmiron but I thought I read a post here the patent is expiring or has expired which means some generics should be coming out soon hopefully. I don't know who informed you that you can't keep taking it but maybe if you can keep taking it for another 6 months and hopefully by then there might be a generic. If would be awful for you to stop and then regress.
    There is cystoprotek which is a natural "alternative" but its not really the same thing. It supposed to help rebuild the bladder lining. I've been taking it for at least 9 months and haven't noticed any difference but I keep taking it in the hopes its helping.
    Last edited by cmclien; 02-04-2011, 10:14 AM.
    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


    • #3
      Ic

      Maybe your uro can give you an alternative med that will work for you. I wish you good health and luck. Keep us up to date all info is good for all of us.
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      • #4
        If the Elmiron is working for you it would be a shame to have to quit it! I know there is help available in situations of need from the manufacturer and also through organizations here in the US, but I don't know what options you might have in the UK. I agree with the suggestion to speak to your uro about this. Perhaps they can offer a solution or alternatives.

        I gave up Elmiron due to the high cost. I decided to give CystoProtek a try and found that for me it seemed to produce the same results at a fraction of the cost. With either one I found it was still necessary to watch my diet to remain pain free though.

        Vicki
        "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

        Comment


        • #5
          Good feedback

          I was denied longer term disability by my employers disability benefit management company - I have had 7 surgeries in the last 3 years, all in an effort to find out what was causing my pain - including 2 prostate surgeries - last one prostate was removed ( no cancer ) - it was not until summer of 2010 that I was diagnosed with IC PBS -
          I was put on Elmiron and after about 4-5 months started to see improvements - that is to say instead of a horrible burning pain it is no more of just bad pain but thank God not this burning pain that would send me to ER - and they would put be on antibiotics over and over and over and then send me home and tell me to drink a lot of cranberry juice which just made things worse.
          As I had been on short term disability for the year ( 2 surgeries in the last 12 months ) I had to file for long term -
          I was told to see an Independent specialist ( how independent, he was being paid by my employers benefit management company ) - In his report he does not even mention IC PBS even though I repeated it to him over 5 times. Of course he said that there was nothing wrong with me - I have reports from 6 specialists stating that I am not ready to go back to work - repeatedly faxed to them. I asked them what the latest information they had, they stated Sep 1st 2010 - they denied my long term at end of Dec 2010 - I asked them if they where not interested in attaining the latest information - they where not interested - Needless to say my specialists are just furious -
          But what options does one have - well hire a lawyer - their fee is 40% of your benefit pay - and that is for however long you will receive the benefit - it will take 8-12 months to appeal in which I have no insurance and no income - that is the game the insurance company plays - so even if you should win the appeal and they will have to pay you retro for the time it took to appeal the case, they can then a month later deny again and you will have to go through the whole process of 8-12 months with no benefits or insurance - and for SSDI benefits well it take s up to 2 years of which the lawyer gets $6000 of your retro pay which is not much to begin with.
          Well so I am in the same situation - Cannot afford $550 for Elmiron a month. I had bought a bottle of Cysto Protek last year, but as I was on Elmiron I did not start taking it - So my question is, are there any side affects of CystoProtek? I tolerated Elmiron Ok. Will it do me any good to take this for however 120 gel capsules will last?
          I also take fish oil - but I know that the Elmiron was helping some what - Is there a way to get Elmiron cheaper in the US for those who have no income ?

          Comment


          • #6
            That's terrible Tandem. Sometimes it seems like the world is full of manipulating parasites. The sort of run-around you are being put through makes me angry. Maybe you can find something in this thread and all of it's links that will be helpful to you.....http://www.ic-network.com/forum/showthread.php?t=10666

            I don't know much about the side effects of CystoProtek. I guess it's reasonable to believe that there are some associated with it, and they probably disclose them on their website.

            I hope you can find some assistance to continue with the Elmiron!
            Vicki
            "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

            Comment


            • #7
              Hi Tandem,
              Really awful what you are/have been going through.
              The only side effects that I know of are some stomach upset. I personally have not experienced this, maybe its because I always take it with a meal or maybe because I take omeprazole every morning which offsets stomach side effects of most meds. They have you start out with 1 twice a day I think and then after a week go to 2 twice a day. I have not been on elmiron yet so I can't compare them for you but maybe someone else has...
              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
                Re: Alternative to Elmiron????

                Why isn’t there any generic for Elmiron? It is so sad a medication that can help so many is out of reach because of the cost

                Comment


                • #9
                  Re: Alternative to Elmiron????

                  There used to be one from India that I believe was named Comfora. Same ingredients but I'm not sure if it is still available.

                  Comment


                  • #10
                    Re: Alternative to Elmiron????

                    Originally posted by Beth Elizabeth View Post
                    Why isn’t there any generic for Elmiron? It is so sad a medication that can help so many is out of reach because of the cost
                    Comfora is a generic for Elmiron manufactured in India. I suspect there may not be enough people taking it in the US for manufacturers to develop a generic. You could give Cystoprotek a try --- it also helps rebuild the bladder lining.

                    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


                    • #11
                      Re: Alternative to Elmiron????

                      I know some people get the same ingredients that are in Elmiron compounded at compounding pharmacies at a much cheaper price. I think they go through Canada. You can do a web search. Might be something to look into. I tried Cystoprotek but it bothered my bladder at the time. But it is something else you could try as Donna suggested.

                      Comment


                      • #12
                        Re: Alternative to Elmiron????

                        I think you can get a 30 day supply of elmiron from canada for as low as $172 us dollars. That isn't exactly cheap but it isn't as outrageous as say $700-800.

                        Comment


                        • #13
                          Re: Alternative to Elmiron????

                          Originally posted by neohioic View Post
                          I think you can get a 30 day supply of elmiron from canada for as low as $172 us dollars. That isn't exactly cheap but it isn't as outrageous as say $700-800.
                          I just checked prices in Canada. You can get the generic form of Elmiron (Pentosan Polysulfate Sodium) there for $164 for a months supply (90 100 MG capsules). It actually comes from Australia, so it takes 14 to 28 days to get it. Free shipping though. My insurance will not cover it and the price I was quoted here was $1,089/Month, which of course I cannot afford. Even the $164 is a stretch for me. I've not bought it yet. I'm going to talk to my urologist and ask for another route to go.

                          Comment


                          • #14
                            Re: Alternative to Elmiron????

                            Not sure where you got those prices since when i tried to get elmiron at the pharmacy (i live in canada) a 30 day supply was about 900 dollars.
                            Just crazy since when i was first diagnosed, i had a prescription and sure i forget the exact price but it was actually attainable but now it is definitely not.
                            How come its been on the market so long and has gone up that much in pricing?
                            I do not understand, back in the day the older the medicine got the cheaper it got and now its the opposite.
                            What the heck?
                            Have dealt with chronic pain and gerd/ibs since '98 endometriosis, vulvodynia diagnosed 2000, ic diagnosed around 2004, chronic epstein barr-like virus 2011
                            Hysterectomy/oophorectomy 2014 endo had destroyed everything
                            Now dealing with recurrence and menopause in late 30s
                            Other things--migraines, chronic hives, eczema, raynauds, congenital scoliosis, broke 3 vertebrae in middle of back when i was 16, heart defect (ventrical septal defect)

                            Comment


                            • #15
                              Re: Alternative to Elmiron????

                              Here's where I got the prices...

                              https://www.canadadrugpharmacy.com/b...ron-online.asp

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