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  • Some info. about Uracyst in Canada

    Hello everyone ,
    it's been such a long time since I've posted anything and sinced I've checked in on this wesite, as I am doing very, very well with IC and it seems to be in 'check'. I have also been having some things that I'm not supposed to like coffee, red wine, green tea, and other things that I avoided. I havent' had a flare up in about 6 months! and I SLEEP THROUGH THE NIGHT WITHOUT HAVING TO GO PEE!! YAA HOOO!!

    I have been getting bladder instillations for the past year every 2 weeks with Uracyst. I go to the doctor and he does the instillations. He told me that you can't get Uracyst with a perscription but what he wasn't telling me is that you don't need a perscription to buy it.

    I have Great news for those of you who are interested in getting Uracyct! I just bought my first box all for me at the drugstore. I went in and asked if the pharmacist could order the Uracyst and he called 2 suppliers and ordered a box for me! no perscription! no questions asked! I believe that I read about it here last year and how people were coming up to canada to get the uracycst. Well you can. I went to one of our large 'Shoppers Drug Mart" stores.

    Anyway, if I could just say that this medication has been a god send for me and I've been a changed person all because of this medication. I don't have the worry, stress, pain, and bathroom urges hardley at all.

    Thanks and if this can help out one person to find some relief then I'm glad that I've posted this....maybe someone else already has and it is worth a try.



    So I thought I'd check in and let you all know that YES you can buy Uracyst by the box. 4 viles = 4 treatments

  • #2
    Im in the US. how much does it cost?
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy

    Comment


    • #3
      I just did a brief search and found one place where 4 vials cost $350! There were some clinical trials done in the US and you can read about those as well if you google it.


      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


      • #4
        wow thats alot! thanks though
        Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

        I have moderate-severe IC

        Currently stopped taking all medications due to pregnancy

        Comment


        • #5
          Hi there,

          Actually I paid $260.00 for 4 vials, that's $65 a treatment and to me it's worth having on hand in case I get a flare up.

          Normally I don't have to pay for it here, I have the instillations done at the hospital (actually had one today) The last time I had a flare up I spent 6 hours in the Emergency and then had to beg an ER doctor to give me the instillation as usually they are done in the day treatment clinics.

          Yes it is expensive but to me, I'm worth the $65 dollars to ease the pain of a flare up and for me this medication has been amazing! (I've missed days of work due to a flare up that has cost me $100's.)

          Anyway, just thought I'd share.

          Comment


          • #6
            Hi Sharloom,

            I just paid $400 for 4 vials. More precisely, my insurance did, but I'm curious as to why there is such a difference in cost. Can you give me details on exactly where you ordered Uracyst from and through what pharmacy chain?

            I called Stellar Pharmaceuticals, the company that produces Uracyst, and talked with one of their reps.
            http://www.stellarpharma.com/uraCyst.htm
            He gave me a lot of useful information. He said that they cannot mail Uracyst over the border, but there is no problem if a person carries it across the border. He said I could order the Uracyst either through a pharmacy or just call Stellar and they would ship it directly to my home in Canada. As you said, no physician orders are needed except for insurance purposes. He also advised to call around to different pharmacies because some are cheaper than others, typically the larger ones like Walmart or Costco that have minimal or no dispensing fee.

            I'm just about to give Uracyst a try and I certainly hope it works for me as well as it has for you. I would so love to eat apples and bananas again.

            Onset of symptoms: June 2010
            Initial symptoms: No frequency or urgency, only pain! pain!! pain!!!
            Diagnosis: September 2010
            Current status: Fabulous. I'm feeling 90% of normal.

            Current Treatment

            Gluten-free diet
            TUMS and Prelief with acidic foods
            Alkalinizing drops with acidic drinks
            Elmiron for replenishment of the bladder lining
            Dom-Oxybutynin for bladder spasm


            Past Treatment

            URACYST instillations monthly - really helped but had recurrent bladder infections because of the catheterization

            Comment


            • #7
              I work with a girl that has had this treatment with great success. I am wondering what is the talk about the success rate and is there alot of side effects. Can anybody provide me with some info.
              Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

              Tried:
              Detrol:only took one pill and it made me sick
              Elmiron:caused horrible pain(took 1 week)
              CystaQ:caused alot of burning and pain(only took one pill)
              Wellbutrin:only on it for three days as it caused alot of bladder pain
              Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
              Prelief:made my bladder burn and feel tingly.

              Take:
              Uracyst:Started May 19 2011
              Enablex:take one pill daily with no issues
              Naproxen:for pain as needed
              Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
              Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
              Supplements:Whey Protein powder daily
              Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

              Comment


              • #8
                Hi Carole,

                In Canada, trials of Uracyst did very well. I can't remember, I think it was somewhere between a 50% and 60% success rate. The clinical trials done here in the U.S. not too long ago, did not show as successful. I've seen a patient or two on the boards here who have said that their uro says it DOES NOT work for the majority of their patients. I've also seen others say that their uro's say it DOES work well on the majority of their patients. Hmmm....very strange. The last I heard, Stellar (who manufactures Uracyst) was looking for another company who would be willing to market it and put it through a much larger trial here again in the U.S. The first trial was small I believe.
                I have a good IC friend here on the boards who was not helped by it sadly. I also have another friend here on the boards who has been very much helped by it. It would honestly be one of the first treatments I will want to try if I ever start suffering badly again. Speaking privately with several individuals about their success with it definitely has me fascinated. I have heard of a few on the boards here who have complained of side effects but I think you'll always find a few who don't do well with any treatment. What I like about Uracyst is it's composed of Sodium Chondrotian which is a naturally occuring substance in our bodies unlike most other treatment options. The individuals I've talked to have not had any negative side effects. There is a gal here on the boards that goes by the name IcyAngel23 who is extremely sharp and knowledgeable in regards to Uracyst. She always seems very willing to answer any questions and to share her experiences. Hope that helps a little.

                Jill
                "Where there is hope there can be faith. Where there is faith, miracles can occur."

                Comment


                • #9
                  Carole,

                  I unfortunately was one of the ones that did not respond to Uracyst. I did eight treatments and saw no improvement, but I would tell anyone to try it.

                  Suzanne

                  Comment


                  • #10
                    Thanks jvr and suzannes. I am going to speak to my Urologist when I go again in April. She has never mentioned this treatment as an option. I take Enablex daily and Naproxen on days I have alot of pain. My symtoms are manageable but I do have symptoms daily. If I could improve on that it would be great. My coworker said her pain was horrible she couldn't stand even a drop of urine in the bladder. She went for treatments and now barely has any symptoms. The part that really surprised me is that she told me this while drinking a cup of coffee.I asked her if she followed the diet and she said no. I asked well how can you do that and not have pain and she said she just does. If I drank even a sip of that coffee I would be in agony. I really didn't get that. It made me wonder if she really had IC. The diet I can do but it would just be nice to be able to be symptom free..well as much as possible. Thanks again.
                    OH are there any concerns regarding this treatment making things worse?????
                    Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

                    Tried:
                    Detrol:only took one pill and it made me sick
                    Elmiron:caused horrible pain(took 1 week)
                    CystaQ:caused alot of burning and pain(only took one pill)
                    Wellbutrin:only on it for three days as it caused alot of bladder pain
                    Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
                    Prelief:made my bladder burn and feel tingly.

                    Take:
                    Uracyst:Started May 19 2011
                    Enablex:take one pill daily with no issues
                    Naproxen:for pain as needed
                    Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
                    Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
                    Supplements:Whey Protein powder daily
                    Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

                    Comment


                    • #11
                      Hi Carole,

                      I have never heard of anyone getting worse from it. It's supposed to be soothing like a rescue instill. My friend who was not helped much by it, actually felt very much soothed by it while she was holding it in. The soothing feeling just did not last once she peed it out:-( My other friend in southern California who has been helped by it, asked her urologist to write her a prescription for it. Her urologist is really hip and knowledgeable with IC so he agreed luckily. Not all will because it's not FDA approved her. You can also order it and instill it yourself too. As far as the coffee, I don't think that's totally unheard of. I have seen a few posters on here who have said they can eat almost anything after using it too. (Just like Sharloom who posted above) I've also seen others say they still have to watch their diet closely. Maybe similar to Elmiron how some can eat more varied diets and some cannot while taking it? Good luck in whatever you decide and keep those recipes coming! :-) Just kidding...

                      Jill:-)
                      Last edited by jvr; 02-26-2011, 03:29 AM. Reason: Added something....
                      "Where there is hope there can be faith. Where there is faith, miracles can occur."

                      Comment


                      • #12
                        Thanks Jill. I appreciate the info. As for the recipes there is a never ending pool of them as I love to eat...lol As you seen I've been reposting Diane M. recipes. I will be posting more of mine soon.
                        Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

                        Tried:
                        Detrol:only took one pill and it made me sick
                        Elmiron:caused horrible pain(took 1 week)
                        CystaQ:caused alot of burning and pain(only took one pill)
                        Wellbutrin:only on it for three days as it caused alot of bladder pain
                        Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
                        Prelief:made my bladder burn and feel tingly.

                        Take:
                        Uracyst:Started May 19 2011
                        Enablex:take one pill daily with no issues
                        Naproxen:for pain as needed
                        Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
                        Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
                        Supplements:Whey Protein powder daily
                        Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

                        Comment


                        • #13
                          Elmiron, Cystistat, and Uracyst all help to rebuild the bladder lining. If the bladder lining is intact again, then the underlying muscle wall is protected and anything in the diet/urine shouldn't cause symptoms. People may shy away from instills in favor of Elmiron, but only 5% of oral Elmiron gets to the bladder, and this may be part of why it can take a long time to figure out if it is helping. 100% of the Cystistat and Uracyst get to act on the bladder lining, which is why some people notice a difference within a month, and which is why I want to try it. Instills = not fun. IC = even less fun than instills.

                          Some other lady on the IC Network talked to people who participated in the US Uracyst trial and she felt that the study was confounded by the catheters the researchers used. Apparently they used a red-tip (?) catheter that is particularly irritating to the IC urethra, so that any benefit from Uracyst that people in the study may have had was canceled out by the urethral pain from the catheterization (in theory). I asked the Stellar Pharmaceutical rep about the study and he said the company contracted to conduct it were very secretive and just suddenly dropped the study without any explanation. He also said Uracyst was just approved for use in South Korea, bringing the total to 37 countries where Uracyst is available. It seems so very wrong that is available in South Korea but not the U.S.

                          Onset of symptoms: June 2010
                          Initial symptoms: No frequency or urgency, only pain! pain!! pain!!!
                          Diagnosis: September 2010
                          Current status: Fabulous. I'm feeling 90% of normal.

                          Current Treatment

                          Gluten-free diet
                          TUMS and Prelief with acidic foods
                          Alkalinizing drops with acidic drinks
                          Elmiron for replenishment of the bladder lining
                          Dom-Oxybutynin for bladder spasm


                          Past Treatment

                          URACYST instillations monthly - really helped but had recurrent bladder infections because of the catheterization

                          Comment


                          • #14
                            Hi Pipkin,

                            Did the Stellar rep say if their is a chance that any other company might pick up and move forward with Uracyst where Watson left off? I wish the FDA would approve this on a compassionate basis.
                            "Where there is hope there can be faith. Where there is faith, miracles can occur."

                            Comment


                            • #15
                              i don't understand how elmiron got approved given the dismal results of that product?????
                              What helps
                              Elmiron 200 mg bid
                              Wellbutrin XL anxiety and depression
                              Oxybutynin ER 10 mg
                              Yoga


                              tried and failed
                              Cardura, Hytrin, Flomax, Prosed DS, Vesicare, Pyridium, Cystoprotek (caused GI problems), Lyrica, Pamelor

                              "We can't wait until the storm is over. We need to learn to dance in the rain."

                              Comment

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