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  • Why Some Patients Don't Respond to Elmiron

    Pentosan Polysulfate (aka Elmiron) has always had a poor bioavailability. Researcher Deborah Erickson and colleagues now suggest that this is due to the molecular weight of PPS.

    Read more at: http://www.medicalnewstoday.com/medi...p?newsid=48765
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  • #2
    So there is a very good reason why Elmiron did not work for some of us - because basically none of it gets into the bladder. If that is so, then why does it appear to work for some - placebo effect or...? Scratches head.

    Does this mean it would be wiser to use this as an instillation?

    Blessings,
    Lori

    Comment


    • #3
      P.S. I find it interesting that they write, "the majority of patients do not improve on..." I remember not too long ago, Elmiron was considered to be the best thing that ever happened to IC patients - one uro told me "Elmiron ALWAYS works." Now urologists seem to be of the opinion that it does not work for the majority of patients. What a switch!

      Comment


      • #4
        Good question, Lori

        Do you think it could have something to do with metabolism? Like, different peopel have inherently different metabolisms, and so their bodies will process the Elmiron differently...? Perhaps those with fast metabolisms process it too quickly for sufficent gastrointestinal absorption to occur?

        Okay, that was a complete guess, so it's probably wrong. But I really would like to know why it works for those whom it helps. I, for example, feel that Elmiron has helped me, in combination with Hydroxyzine and Urocit-k. However, I'm not sure what role Elmiron itself played, since I started Hydroxyzine and Urocit-k at the same time that I restarted Elmiron. Maybe Hydroxyzine and Urocit-k were did most of the hard work, and just took Elmiron along for the ride

        It does seem like it would work better as an instill, though, doesn't it? They should do a study of oral Elmiron and placebo instill vs oral placebo and Elmiron instill. That would be interesting.

        Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
        Current IC treatments: menstrual suppression
        Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
        As-needed treatments for other conditions: Klonopin, Ambien

        Comment


        • #5
          LOL - I'm just glad that I won't be called a liar or crazy anymore when I say that Elmiron didn't help me. Of COURSE it didn't help me - it doesn't help the MAJORITY of patients, doctor!

          Blessings,
          Lori

          Comment


          • #6
            LOL, yeah...

            Lori, I say you print this article out about a dozen times, go buy some fancy envelopes, and send a copy to each of your old uros

            Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
            Current IC treatments: menstrual suppression
            Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
            As-needed treatments for other conditions: Klonopin, Ambien

            Comment


            • #7
              That's a VERY good idea! The same uro who told me "Elmiron always works" also told me "IC is not a painful disease." Wonder what he thinks now that IC is being called "Painful Bladder Syndrome!" Wonder if he's telling any of his new patients that IC isn't painful and that Elmiron always works....

              Sigh. You trust doctors to know what they are doing...but sometimes they let you down.

              Blessings,
              Lori

              Comment


              • #8
                My new urologists doesn't put any patients on elmiron, at the very least she doesn't recommend it (I'm sure if someone really wanted to go on it she'd let them, just like she let me try cytotek and it worked).

                I mean even in the elmiron patient insert it says that it works in something like one third of patients.......so for the majority of patients it doesn't work. That's not very good statistics if you ask me.

                Is there anything they can do to correct this problem with elmiron? Are they going to start injecting it into us like they did with the rats?

                Maybe I've become disillusioned but I highly doubt Elmiron works in anyone, and in those it supposedly did work.. I think that was spontaneous remission.

                Plus the side effects are HORRIBLE, I had major hair loss and stomach ulcers on Elmiron as well as nausea etc... which is comparable to side effects of chemo. Give me a break!
                current meds:
                cytotec 200mcg twice daily
                toprol
                allegra

                ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

                dx: hashimoto's thyroiditis 1998
                dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
                dx: endometriosis 2003
                dx: innapropriate sinus tacchicardia 2005

                meds tried but failed:
                elavil (6months)- severe tachycardia
                elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
                a bunch of others



                Me and my best friend's baby (also my Godson!)

                Comment


                • #9
                  Sacausa, I think this is a very unpopular opinion, but...I'm with you. I truly think that when Elmiron works, it's really due to something else, spontaneous remission, or even placebo effect. I know that there are many, many, many people here who firmly believe in the efficacy of Elmiron.

                  Blessings,
                  Lori

                  Comment


                  • #10
                    As I recall, at the time it was approved by the FDA it was showing effectiveness in something like 38% of IC patients --- not a terribly high percentage, but when there wasn't anything before, I think it's still an improvement.

                    There are some people out there who are living normal lives as a result of taking elmiron. Unfortunately, I am among those who couldn't take it. I've been thinking of giving it another try, but haven't discussed it with my uro yet.

                    Donna
                    Stay safe


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                    Comment


                    • #11
                      I know it's not a very popular opinion..... but the drug isn't that efficient. I think the drug companies are just taking advantage of DESPERATE people that will try anything to get rid of their frequency/pain. It just gets on my nerves because with Elmiron you're just trading in one set of symptoms for another (and that is if it works...). I cringe when I read about "newbies" asking if their diarrhea, stomach pains, hair loss etc. is "normal."

                      For those that it does work for, great.

                      I only wonder if according to this study I only absorbed 2% or so of this drug, and I had such horrific side effects...... How bad would the side effects have been if I absorbed 100% of this drug? Scary.
                      current meds:
                      cytotec 200mcg twice daily
                      toprol
                      allegra

                      ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

                      dx: hashimoto's thyroiditis 1998
                      dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
                      dx: endometriosis 2003
                      dx: innapropriate sinus tacchicardia 2005

                      meds tried but failed:
                      elavil (6months)- severe tachycardia
                      elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
                      a bunch of others



                      Me and my best friend's baby (also my Godson!)

                      Comment


                      • #12
                        I am very curious if they have any theories as to why it did help some??? I mean if they could figure that out maybe they could develop a better drug! I am one of the very lucky ones that Elmiron helped....and the huge improvement was worth it. Very few medications work for the majority of patients so I find it odd that a doctor would say that a medication works for all...Lori, I think it is that doctor that may be liar or crazzy...certainly not you!!

                        Sounds like a good questionaire on those Elmiron did work for....to find out what we have in common besides that?
                        Faith, Hope, and Love,
                        Katrina


                        I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                        IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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                        Comment


                        • #13
                          I think it would be a wonderful idea for the company to find out why it does work on some - see what the various factors are. That would help in figuring out which patients to prescribe Elmiron for.

                          What makes me mad is how incredibly expensive this drug is, coupled with the fact that you have to take it for at least six months before you call it quits (or a year, or longer, as many here will tell you.) Six months or a year of an expensive drug...when it doesn't work, it's nothing but a major rip-off for the patients. I'm mad on behalf of any patients who scrimped and saved in order to buy the drugs, and found that it didn't work for them.

                          The most recent study showed a REALLY dismal success rate of Elmiron after six months (the time the makers of Elmiron insist it reaches maximum effectiveness) - only 19%! If you look at any studies, that's about what the placebo rate is. The NIH study on Elmiron was discontinued because it was shown in the study that it was not statistically different from placebo.

                          I personally think a lawsuit against the makers of Elmiron is called for, with a rebate for anyone who has not been helped by Elmiron. Those earlier studies showing a great effectiveness rate were studies done by the company - not exactly impartial studies. I smell a rat!

                          Just my personal opinion, of course.

                          Blessings,
                          Lori

                          Comment


                          • #14
                            I think you're right Lori.

                            Katrina, did you only take Elmiron without changes to your diet or other medications as well?
                            current meds:
                            cytotec 200mcg twice daily
                            toprol
                            allegra

                            ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

                            dx: hashimoto's thyroiditis 1998
                            dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
                            dx: endometriosis 2003
                            dx: innapropriate sinus tacchicardia 2005

                            meds tried but failed:
                            elavil (6months)- severe tachycardia
                            elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
                            a bunch of others



                            Me and my best friend's baby (also my Godson!)

                            Comment


                            • #15
                              What makes it so difficult to evaluate any medicine with IC is that our symptoms naturally wax and wane, and often IC'ers go through brief periods of complete remission, as well.

                              I guess that's why they have the placebo in studies, too, to try to figure that part out...so when you read that Elmiron helped 19%, that sounds pretty good, at least worth a good try, until you hear that the placebo rate is similar to that....then you have second thoughts.

                              I wish that they would (very soon) have some very large, long (at least one year, preferably 2 or 3 years) studies on Elmiron, and studies that are not supported in any way by any drug company, either the makers of Elmiron or competitors. So that we could be sure things are impartial. I wish that they would involve hundreds of IC patients, and would make sure that nothing changed during the course of the study - no other meds, no changes to diet or lifestyle habits, etc. It would be really hard to set those studies up, but I would like a more definitive answer to be available to us.

                              If the newer studies hold up - if Elmiron is found to be not much more effective than placebo with larger studies - then I think for certain it should fall out of favor as an IC treatment. It should always be available to anyone who wants it, but if it truly has such a low effectiveness rate, barely over placebo, then it shouldn't be a mainstay of IC treatment.

                              I am glad to hear that your urologist does not prescribe Elmiron routinely. I will be very happy when I hear that is the case with most urologists.

                              Blessings,
                              Lori

                              Comment

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