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  • Elmiron would cost me $485

    My insurance company pays only $40 towards the total!! That just made me even more depressed! I'm broke and complain about paying $70 for a month supply of Vyvanse (ADD meds) but $485?? Are they out of their minds?

    The pharmacist said call the doc and ask for a plan B. Yeah...my uro said an alternative to Elmiron are supplements like Cystoprotek but I've been taking it for a while and see no difference.

    I'm so depressed.....and it's my B-day today
    Last edited by ICNDonna; 03-06-2011, 08:44 AM.
    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

  • #2


    I know. That price is utterly ridiculous isn't it?

    How long have you been taking the CystoProtek? I took Elmiron for a while (I had to give it up due to the cost) and found it took many months before I saw improvement. I wonder if CystoProtek also needs time to do it's magic?

    Enjoy your special day!
    Vicki
    "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

    Comment


    • #3
      Thank you, Vickie. I've been taking the Cystoprotek for 3 weeks now, 5 capsules/day. Very minor change if any....just ordered a bunch of powders from Beyond a Century that are supposedly helpfull in restoring the GAG layer in the bladder.

      N-Acetyl-Glucosamine
      Chondroitin Sulfate
      Gotu Kola
      pure MSM powder

      I think we're in this for the long haul...there's no shortcut unfortunatelly.
      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


      • #4
        Happy Birthday Runner!

        Wow, that REALLY stinks. Mine costs about 130/mo. When they first rang it up it was like $360 because my doctor prescribed it for 3 months. They re-did it and sold me a months worth because I wasn't even sure how I would react to it.

        Some people here have had success with cystoprotek, unfortunately I'm not one of them.
        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


        • #5
          I'm in so much pain again, had to take 1/2 Vicodin this really sucks My primary doc prescribed it when I had kidney stones but I'm not sure if he'd be willing to prescribe it again for IC. He had no idea what it was until my uro wrote him about it.

          Should I call the urologist's office and tell them I want at least some Percocet or something and give them hell about the cost of Elmiron?
          There's gotta be some other medicine to heal the bladder, urethra and vaginal tissues...isn't there??
          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
            Unfortunately NO, its the only approved FDA drug out there. Its considered an oral therapy along with amitriptyline, hydroxyzine and cimetidine though the latter two work best on people who have other allergies.
            There isn't anything that will cure it but maybe instillations would help you, did you talk to your uro about those? My UG says he has great success with them and some people it lasts 6 months and others 2 years before they have to come back and do it again. We've agreed if the elmiron doesn't work then by fall or maybe sooner I'll be doing the instillations for 6 weeks.
            I'm sorry you are suffering on this day (or any other day too).
            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
              I've read some articles that say aloe juice is supposed to help restore your bladder lining so I am going to go pick up some George's aloe tomorrow (Its tasteless, like drinking water). My husband's IBS has started giving him problems again too so he needs to go back on the aloe anyway.

              I know its not much but at the bottom of the elmiron website there is a place to sign up for $35/mo off of your next 4 perscriptions.

              http://www.orthoelmiron.com/

              You could also try contacting the company and see if they would be able to help you. Some companies will and some won't but it never hurts to ask.

              Good luck and HAPPY BIRTHDAY!!

              PS. If it were my birthday and I was in pain, I would definately have some chocolate!
              Kerry

              DVM-to-be

              Current Diagnoses:
              Solid thyroid mass (currently being investigated), Hypothyroidism, Hypersomnia, Mild chronic hypoglycemia, Interstitial Cystitis (unconfirmed), Uterine Fibroid

              Things I have tried with success (although limited improvement, this is what I continue with):
              glucosamine/chondroitin, chromium picolinate, probiotics, yoga

              Things I have tried without success:
              prelief, diet, NuvaRing, birth control pills, abstinence, profanity, crying, AZO (reduces the pain, but comes back 10 fold after stopping)

              Things I was diagnosed with, treated for & then told I never had:
              Endometriosis, Lymes Disease

              Comment


              • #8
                Originally posted by critterfixer View Post
                I've read some articles that say aloe juice is supposed to help restore your bladder lining so I am going to go pick up some George's aloe tomorrow (Its tasteless, like drinking water). My husband's IBS has started giving him problems again too so he needs to go back on the aloe anyway.
                Just make sure you get some without citric acid in 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


                • #9
                  awww runner *hugs*.. there is a patient assistance program for elmiron if you google johnson and johnson patient assistance program. they will give you elmiron up to a year at a time if you qualify for free.thats what im having to apply for because my insurance covers very little too. hope you feel better soon and had a happy b-day.
                  Newly IC diagnosed as of February 2011.

                  Medications I'm on that seem to work:
                  Zoloft- one once a day
                  Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                  Failed Meds:
                  Elmiron-after 4 months,digestive side effects got to be too much
                  tramadol-allergic
                  DMSO treatments(5-6)
                  probiotics

                  THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                  AROMATHERAPY-candles,incense
                  Village Naturals Aches and Pains Peppermint Bath Salts
                  Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                  ACUPUNCTURE/HERBS
                  Significant pain relief so far.

                  MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                  ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                  ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                  Add me on facebook Angela Hasic

                  ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                  Lord, make me an instrument of your peace;
                  where there is hatred, let me sow love;
                  when there is injury, pardon;
                  where there is doubt, faith;
                  where there is despair, hope;
                  where there is darkness, light;
                  and where there is sadness, joy.
                  Grant that I may not so much seek
                  to be consoled as to console;
                  to be understood, as to understand,
                  to be loved as to love;
                  for it is in giving that we receive,
                  it is in pardoning that we are pardoned,
                  and it is in dying [to ourselves] that we are born to eternal life.

                  Comment


                  • #10
                    Originally posted by 425runner View Post
                    My insurance company pays only $40 towards the total!! That just made me even more depressed! I'm broke and complain about paying $70 for a month supply of Vyvanse (ADD meds) but $485?? Are they out of their minds?

                    The pharmacist said call the doc and ask for a plan B. Yeah...my uro said an alternative to Elmiron are supplements like Cystoprotek but I've been taking it for a while and see no difference.

                    I'm so depressed.....and it's my B-day today
                    You're right. That's alot of money to pay for a med that takes a year to be effective and was effective in only 38% of patients in trials.Yikes.

                    Comment


                    • #11
                      That's terrible! I am one of the few who have decent coverage for this med. I pay $30 a month co-pay. However, this past refill I had 3 months worth, brought it home and couldn't find the bottle of Elmiron! I looked for over a week, broke down, went to the pharmacy. Of course my insurance wouldn't let me have another refill right away, so I bought a weeks worth - $130 cash price. Then I got home and my son found my bottle of meds - our puppy must have knocked it off the desk - it was under the couch!

                      I have two other meds that cost $1500 month retail. Goodness sakes - I can't believe how expensive some of these meds are!

                      Hope you're feeling better soon.
                      Conditions:
                      IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

                      Medications
                      Elmiron 3x day
                      Trazadone at bedtime
                      Tramadol as needed for pain
                      Monthly B-12 injections
                      Continuous Birth Control (even though I had a hyst, to control cysts)
                      heating pad, hot epsom salt baths, strict IC diet
                      Interstim implant 9/11
                      Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

                      Failed Bladder Treatments
                      Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching

                      Comment


                      • #12
                        I have pretty good insurance-was really good at one time or another but like all things it must end and the prices are slowly going up on us.
                        for Elmiron I pay $35.00 a month or $105.00 for 3 months. I usually do the monthly one as it costs me the same one way or another.
                        If I didn't have insurance it would cost me over $700 for a month (180 caps).
                        I have one medication that until recently costs me over $1000.00 (if no insurance) its Lovenox. It is now generic which I am greatful.
                        My Mom keeps asking me how we are going to pay for our meds once we retire-- I told her that is why I am going to try to continue working for 3 years (I will have full benefits including prescription costs) don't know how much it will cost me at that time but we will jump the hoop when we get there.

                        Comment


                        • #13
                          I'm in the same boat -- $500/month. I don't want to take it anyway (s/e and because it only seems to help some people) so this is just one more check mark against it for me.

                          I second the idea of instillations.
                          Mom to two littles (remissions while pregnant/breastfeeding)
                          Sufferer since mid-90s
                          Finally dx'd properly much later

                          Comment


                          • #14
                            canada as source?

                            In Canada elmiron is about $200/mo. Can't I order it from there if I don't have script insurance (which I may not in a few weeks)?
                            I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                            Comment


                            • #15
                              Originally posted by MamaZ View Post
                              I'm in the same boat -- $500/month. I don't want to take it anyway (s/e and because it only seems to help some people) so this is just one more check mark against it for me.

                              I second the idea of instillations.
                              I agree 500/mo is way too much!
                              But what if you're one of the people it works for? My UG's experience is close to the trial, he said if he gives it to 10 patients, 4 or 5 will respond well to it.
                              He offered me instillations first but I was like uh no, think I'll try the oral route first! But thats just me lol
                              Hope the instillations bring you relief, he did say he gets more like an 80-90% success rate with those, his are heparin, marcaine and kenalog.
                              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

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