No announcement yet.

Elmiron Shortage Temporary!

  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    I am so tired of all the negative Elmiron comments. I understand it doesn't work for some people and some people have bad side effects. I have a long list of meds that didn't work for me and I had side effects with at the bottom of my signature, but I don't go around the boards/facebook, etc blasting them and complaining to the FDA, etc. Some of us are dependent on Elmiron and a place where people are upset about not being able to get a med they need is definitely not the place to post these comments.


    • #17
      Originally posted by jane2 View Post
      I to have called Medco, shame on them for not calling me. I also callled my Uro. she is as upset as us. For some instills will work, but for other like me Elmiron seemed to finally make a difference. Now, I remember what it was like before. Guess I get my boxing gloves back on, because I will be doing battle with Pain. At least for now I can do the battle.

      Sweet Texas Hugs, Jane
      I'm upset too! Have been in a flare for four months but before that Elmiron was my wonder drug. It made me basically pain free most of the time. Now I'm wondering if the Elmiron I've been taking this year has been from a bad batch. That's why they're halting shipments, due to what they are calling incomplete product. Makes you wonder how long shipments may have been going out to pharmacies that have been ineffective batches. It sure would make sense in my case as to why I began flaring in late January and it continued to get worse and worse. Now, I'm in pain most of the time and the doctors can't figure it out. Instills don't work for me and I just wonder about whether there's a problem with the elmiron I've been taking for the past several months....


      • #18
        What I thought I read was that the shortage was for 100 mgs of Elmiron. In my dull brain I was thinking maybe they have 50 mgs or 200 mgs. Hopeful thinking?????
        All VERY depressing!! Hugs, Ziggy


        • #19
          Unfortunately Elmiron is only made in 100mg.

          I don't know how long the "incomplete" or whatever meds have been going to pharmacies or if they have, but I've been doing fine with them. It sounds bad, but I'd rather take the incomplete ones than least I wouldn't be freaking out right now!


          • #20
            This is really giving me hope. When I started the drug last May, I felt it worked on the pain within two months. Stupid me, I stopped the drug, but then started it last November and haven't been able to get the pain under control without instills, which I'm not that fond of. So, I hope they put that ingredient back in because I'm tired of catheters.


            • #21
              FDA re: drug shortages

              The FDA posts updates about drug shortages.

              On May 19 (alphabetically as Pentosan Polysulfate sodium) they posted that the Elmiron shortage wouldn't be fixed for two to three months. Who to believe?

              Severe IC developed fairly quickly, autumn 2010.
              So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

              - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
              - Methadone 9 ml/day
              - Instillations:
              - 40ml Kenalog (steroid for inflammation) 2 x per
              week, along with rescue cocktail of heparin,
              lidocaine, sodium bicarbonate
              - 20ml Uracyst, monthly @ $100/per
              - Depo lupron injections for endometriosis, monthly @ $88/per


              • #22
                I can take 2-3 months because fortunately I have some extra, but not "several" months. Hopefully it won't be too long.


                • #23

                  I have been on it two years and was just increased in dosage and finally found some relief. So all this comes as a blow to most of us.

                  I agree we not only need a better drug, but we need a climate that the pharma companies even want to produce it. What we represent 1-3% of popultation. We have two web sources. We need more voice, for one. When the drug can go generic and no once wants to pick it up. that is a voice of concern.

                  I mean they just changed the name for what PC reasons? I really don't care what they call this it is painful bladder for sure. I think my URO cares, so I at least feel I have a source for some kind of help.

                  Guess we will see how we all feel in 3 months. perhaps my hair will get thicker again, there has to be a plus side.

                  Sweet Texas Hugs, Jane
                  Sweet Texas Hugs,


                  • #24
                    I guess someone is making a generic now, or is in the near future. Jill said Monday on Facebook that there would be an announcement about it this week (well last week now since it's Sunday), but haven't heard anything.


                    • #25
                      I took 2 pills yesterday instead of my usual 3 and I'm having some bad frequency today...I don't know if that's why or if it's just from the stress of all this, or something hard to know.


                      • #26
                        I'll second that to needing more of a voice for us! I've been in an almost four month flare after many years of doing well most of the time with Elmiron and Amitryptilene. Now, I'm just miserable and like I was before I was diagnosed in 99. Have lost so much weight due to not being able to eat most things, but it's hard to know if the pain is from food or just the IC being horribly painful. I've done instills and had additional meds added by doctors and nothing is helping me. Now that Elmiron is on backorder I just feel like what else could happen to add the frustration! I'm still taking my Elmiron even though it doesn't seem to improve the flare because you never know when the flare may end. So, I'd never want to stop taking it and it's scary to think it's going to be unavailable for months. I'm trying to stay positive but after all this time and weight lose and pain, it's so hard not to feel hopeless. I sure hope the rumor that it's going to come out in a generic is true. That would be fantastic for everyone who's on Elmiron. Great for the pocketbook and great for keeping the IC at bay until there's a cure! If anyone out there has had a lengthy flare, like over three or four months after doing well for years, and then went back to normal, I'd sure like to hear from you. I need some hope! Thanks!


                        • #27
                          I called the Tel-Drug department of my insurance carrier on Thursday to see if they had some in stock and they assured me they had enough to send out my three-month supply so I was a little relieved to hear that, hoping that would get me through the shortage. I called today to see if it had shipped yet because I'm out of my current supply on Wednesday. They told me there was none to ship; that apparently there were other orders that went out while mine was being "processed". In the meantime, I passed up an opportunity to get some from my local Walgreen's because I would've had to pay cash, $503, for a one-month supply because it had been less than 30 days since my last prescription. I called today, figuring I'd try to just bite the bullet and get it anyway and they told me they are out of stock now.

                          My insurance company said, "Don't worry, this happens all the time with manufacturers and your doctor will just put you on something else in the meantime." Yeah, that works if there IS something else but with Elmiron there isn't. I really just want to cry. Not that that's something out of the ordinary these days but this news is just pouring salt in the wound, so to speak.
                          Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

                          Current medications/treatments:
                          Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

                          Previous medications/treatments:
                          Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek


                          • #28
                            Elmiron of stock

                            i was relieved to read Jill's post stating that elmiron would ship at month end, but I was concerned about other postings that stated it would not. I'm glad i did my own research. Every other resource I've checked states it will not be available. Multiple pharmacists have confimed this. CVS told me that it might be July before it's back in stock. i tracked down pharmacies with adequate stock and bought a couple of extra months worth. i hope it will be enough..It was very expensive, but after waiting 4 months for relief, i can't imagine going without it.

                            I imagine there are folks out there who will read the update on 5-16 and may be left with he impression that they will get their elmiron at the end of the month. Thanks to everyone else who posted otherwise. Let's hope the shortage will be short lived.


                            • #29
                              Originally posted by phoenixgirl View Post

                              My insurance company said, "Don't worry, this happens all the time with manufacturers and your doctor will just put you on something else in the meantime." Yeah, that works if there IS something else but with Elmiron there isn't. I really just want to cry. Not that that's something out of the ordinary these days but this news is just pouring salt in the wound, so to speak.
                              For real.


                              • #30
                                I called my doctor's office today because I feel terrible trying to cut down to two pills a day instead of three...the girl I talked to totally didn't get what I was saying. I think her message to the doctor is going to ask if I there's another med I can take besides Elmiron...of course I know there's not, what I wanted to ask was if there was anything we could do about this frequency I have now...I was hoping someone would call me back so I could tell them what I really meant, but of course no one did. It's taking several days for me to get a call back from them lately.