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  • Elmiron Shortage

    I located 100 Elmiron pills which is amazing because there is definitely a shortage of Elmiron and pharmacies seem to be just finding out about it. My pharmacy was not aware of the shortage until they called around for me to locate the medication. I bought the largest supply I could find in one location and will have to drive 1.5 hours to pick it up etc. I can only buy a one month supply, which for me, is 120 pills.

    I don't think Comfora is available for sale in the US. It appears as though eventually, there will be a phone number or means by which it can be ordered etc. That's all I know.

    I am livid over the way Orho is handling this situation. I agree with Ziggy, there's a real void in information that makes it impossible for us to make good, economic, decisions regarding our health and well being. I wonder if there is a way for the ICA or the ICN to intervene on our behalf to determine the nature of the shortage etc.

    My pharmacist commented that he would not be surprised if Ortho decided not to continue making Elmiron given the fact that there may be a credible generic substitute for the medication. I'm trying to get my insurance company to give me a 90-day override so that I might purchase a 90 day supply at the mail order rate. I advised them that it is unlikely that I will be able to find 360 pills. I would be required to pay the $30 co-pay for any single amount that I can piecemeal together from different pharmacies etc.

    The shortage is real. Now, what are we going to do about it? Let's watch out diets very carefully, rest, try to relax, take Prelief, drink alkalizing teas, Body Rescue can be purchased at Akin's. It's great. Apricot tea or drops. I've checked the PH. Extremely alkaline etc. Cysta-Q might be worth a try. I take one capsule per day and I just added Desert Harvest Aloe Vera Capsules to my daily regimen, one capsule at a time. Do check with your doctor. I've wanted to try Desert Harvest Aloe Vera and the shortage of Elmiron motivated me to order the capsules. Again, I don't recommend adding supplements to your regimen unless you carefully research them first and talk to your doctor too. My doctor didn't comment either way on Desert Harvest because they aren't familiar with the product. Some list members have reported that they no longer take Elmiron but do use Desert Harvest as their first line of defense in treating IC. I've been taking Elmiron since October 2008 and again I report, I have no idea what Elmiron does for me, if anything, but I want to be the one who decides to stop taking it. I don't want to be a victim of a shortage of the medication. I'm writing a letter to Ortho too.

    Comment


    • ICNPersistent
      When you said you were trying to get ur insurance company to give u a 90-day override so that u might purchase a 90 day supply at the mail order rate.
      How do you do that?

      i have Federal blue cross blue shield and they have a contract with MEDCO mail order pharmacy. Uusally my Elmiron cost me 70.00 for a full 90 day supply through mail order..
      Since they were out of the medicine, i had to go to cvs pharmacy and pay over 300.00 for it.
      Do you have medco as you mail order pharmacy?
      You bring up an Excellent point.
      I think that i might contact my inurance company as well, and see if they can do something about that. You say it is called an override?
      Any other inform. u would have would be greatly appreciated .. Thanks a bunch

      Hope everyone is coping well Keep the faith!

      Comment


      • Breaking news!! Elmiron shortage over!! Product now being shipped out of the manufacturing facility. See this link - http://www.ic-network.com/forum/showthread.php?t=71116
        Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

        Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

        Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






        Comment


        • Insurance override for a 90-day supply

          Wolfaleena,

          Let's be thankful that the Elmiron shortage appears to be over but for future reference, the pharmacy help desk at Aetna told me that insurance overrides are rarely provided in cases where there is an issue with the manufacturer or supply or a drug etc. However, in this case, I explained to the representative that Elmiron is THE ONLY oral treatment approved by the FDA for IC etc. The Help Desk forwarded the paperwork for the 90-day override etc. which would have enabled me to purchase a 90-day supply from a retail location at retail prices. I usually pay $60 for 360 pills, or 4 pills per day for 3 months at a time. In this case, I do have a $30 co-pay for a 30 day supply at a retail location. I don't know what I would have been required to pay for the 90 day supply at a retail location etc.

          Yes, you might explore the option of a 90-day override in the future if we experience this problem again without a viable alternative to Elmiron.

          Comment


          • Thanks for the Great News Jill!

            I will have to take a closer look at the chat feature that is operational now in the forum. I don't quite understand where I'm posting infomation and who has access to it.

            Thanks again for all you do on behalf of IC patients and families etc. everywhere.

            Comment


            • Elmiron is available again per Jannsen

              I just got the following e-mail from them as I had signed up to receive notifications from them re: availability.


              IMPORTANT UPDATE: ELMIRON® SUPPLY AVAILABLE AGAIN

              Janssen Pharmaceuticals, Inc., would like to provide you with a product availability update for ELMIRON® (pentosan polysulfate sodium) 100-mg capsules. We have now resumed shipments of ELMIRON® to distributors and pharmacies.
              For a limited time, prior participants are eligible for the EarlyAssist™ co-pay support program. Patients may pay no more than $5 per month for up to 4 months. Visit www.orthoelmiron.com to register.
              If you are currently taking ELMIRON®, you should check with local pharmacies and plan treatment accordingly with your healthcare professional.
              Our priority is to reestablish supply as quickly as possible. We thank you for your patience and understanding.
              What is ELMIRON® ?
              ELMIRON® is a prescription medication used to treat the pain and discomfort of interstitial cystitis (IC). It is not known exactly how ELMIRON® works, but it is not a pain medication like aspirin or acetaminophen and therefore must be taken continuously for relief as prescribed by your doctor.
              Important Safety Information

              ELMIRON® should not be taken if you have a known hypersensitivity to the drug or similar drugs.
              ELMIRON® is a weak blood thinner (anticoagulant) which may increase bleeding. Call your doctor if you will be undergoing surgery or if you are taking or will begin taking anticoagulant therapy such as warfarin sodium, heparin, high doses of aspirin, or anti-inflammatory drugs such as ibuprofen.
              Tell your doctor:
              If you are pregnant or plan on becoming pregnant.
              If you have any liver problems.
              The most common side effects are hair loss, diarrhea, nausea, blood in the stool, headache, rash, upset stomach, abnormal liver function tests, dizziness and bruising.
              Hair loss, when it occurred, was almost always limited to a single area of the scalp.
              Tell your doctor about any side effect that bothers you or does not go away. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please click here for the full Product Information for ELMIRON®.
              If you have any questions on ELMIRON®, please contact the Janssen Medical Information at 1-800-526-7736 or visit our website at www.orthoelmiron.com.
              © Janssen Pharmaceuticals, Inc. 2011 July 2011 02E11044
              To unsubscribe from receiving future updates about ELMIRON®, click here.
              This email was sent by: Janssen Pharmaceuticals, Inc.
              1000 US Route 202 South Raritan, NJ, 08869, USA

              Comment


              • Elmiron is back!!! I got an e-mail from Janssen.

                IMPORTANT UPDATE: ELMIRON® SUPPLY AVAILABLE AGAIN

                Janssen Pharmaceuticals, Inc., would like to provide you with a product availability update for ELMIRON® (pentosan polysulfate sodium) 100-mg capsules. We have now resumed shipments of ELMIRON® to distributors and pharmacies.
                For a limited time, prior participants are eligible for the EarlyAssist™ co-pay support program. Patients may pay no more than $5 per month for up to 4 months. Visit www.orthoelmiron.com to register.
                If you are currently taking ELMIRON®, you should check with local pharmacies and plan treatment accordingly with your healthcare professional.
                Our priority is to reestablish supply as quickly as possible. We thank you for your patience and understanding.
                What is ELMIRON® ?
                ELMIRON® is a prescription medication used to treat the pain and discomfort of interstitial cystitis (IC). It is not known exactly how ELMIRON® works, but it is not a pain medication like aspirin or acetaminophen and therefore must be taken continuously for relief as prescribed by your doctor.
                Important Safety Information

                ELMIRON® should not be taken if you have a known hypersensitivity to the drug or similar drugs.
                ELMIRON® is a weak blood thinner (anticoagulant) which may increase bleeding. Call your doctor if you will be undergoing surgery or if you are taking or will begin taking anticoagulant therapy such as warfarin sodium, heparin, high doses of aspirin, or anti-inflammatory drugs such as ibuprofen.
                Tell your doctor:
                If you are pregnant or plan on becoming pregnant.
                If you have any liver problems.
                The most common side effects are hair loss, diarrhea, nausea, blood in the stool, headache, rash, upset stomach, abnormal liver function tests, dizziness and bruising.
                Hair loss, when it occurred, was almost always limited to a single area of the scalp.
                Tell your doctor about any side effect that bothers you or does not go away. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please click here for the full Product Information for ELMIRON®.
                If you have any questions on ELMIRON®, please contact the Janssen Medical Information at 1-800-526-7736 or visit our website at www.orthoelmiron.com.
                © Janssen Pharmaceuticals, Inc. 2011 July 2011 02E11044
                To unsubscribe from receiving future updates about ELMIRON®, click here.

                Comment


                • Originally posted by TracyS View Post
                  Symptoms I hadn't experienced so badly came back...only after a few days without it.
                  This happened to me too...well worse even...even cutting down from 3 to 2 pills really messed me up...in one day!! This is one of those things it appears that all of us are different in again. I could never go off of it for weeks for medical procedures or I'd be back where I started...hope I never have to.

                  The good news is, that Ortho has started shipping Elmiron to distributors again...Jill posted the e-mail they sent to those that signed up for updates.
                  ~Ashley

                  Comment


                  • I'm a new guy here and I covered this in my intro, but this is specifically elmiron info.

                    In about May '11 a "flare" started. It's been constant since then. My Urologist did a cystocopy and my prostate had about closed me up again. May 26 was surgery #2, green lasering of the prostate. I could empty better, but guess what, IC doesn't like it when you burn it. I went into retension after my surgery. That wasn't one of the listed complications of the surgery.I have a nice supply of LoFric intermittent catheters at home now. Those are THE BEST if you need to do that sort of thing.

                    The swelling has gone down but the pain remains regardless of the elmiron(I'm off the catheters). I decided I should join this forum after reading about the elmiron shortage and more importantly the stories of people who recently have found their elmiron doesn't work (like I did).

                    My last Rx was from 5/07/11. Coincidence? I think not. That's when my flare started. I'm waiting for an email from my long term pharmacy regarding when they might be able to ship a new improved batch to me.

                    As a test I've started on a smal emergency supply of elmiron (20 caps) I have from 7/2010. I've only taken 1 so far (today), but I beleive the pain is already duller. Time will tell, but even if this helps I may want to hold onto a stash the good batch until Ortho gets it right.

                    I'm just not buying the story that Ortho didn't ship out any junk.

                    My best wishes to all IC sufferers, and here's hoping for a quick return of good Elmiron!

                    Comment


                    • I have my suspicions too! How could they just so happen to catch the start of the so called "incomplete product" as they say? Don't tell me they inspect every capsule that goes out the door.

                      Comment


                      • One more thing I've noticed since this latest flare / elmiron difficulty is that combining a "bad" elmiron with 3 200mg Ibuprofen works well for a number of hours. The improvement is quite noticeable. Try it!

                        Comment


                        • I am down to my last few elmiron pills and will soon run out. My mail order pharmacy said they won't be receiving any until a least late july. I hope I don't lose too much benefit, but I am not hopefull.

                          Comment


                          • I have been on Elmiron since June,2008 and it has me in pretty good shape.
                            I'd call it a medical remission. In November of last year(2010) I had open heart surgery and had to come off it. In total I was off Elmiron for about 6 weeks. My bladder was good even though I had a catheter in for 3 days with the surgery and then for about 10 days when I got pneumonia afterwards. I was on massive antibiotics of course but had no problems with my IC. Hopefully,everyone will be ok without it until the supply is regular again.

                            Comment


                            • Possible retraction: I don't want to be a caustic as the urine in my bladder.

                              Even on day 2 of using my old potentially "good" Elmiron, I'm still hurting pretty bad.

                              My appologies to Orthro.

                              I so want to be over this and back to my old normal where Elmiron was working.

                              Fortunately the restroom at work is closer to my desk than my master bathroom is from my bed at home.

                              Comment


                              • You're fine...I think we're all mad at Ortho. It might take some time for the good Elmiron to take effect again, if they did in fact ship out the bad stuff since it takes 3-6 months+ to start working when we begin taking it. Hope you start feeling better soon!
                                ~Ashley

                                Comment

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