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Some info. about Uracyst in Canada

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  • DaniMSC
    replied
    Thanks for the info!!! I really appreciate it because I'm going today for my first Uracyst instill, but I must say I"m a little dismayed- I'm staying in Spain for Uracyst (would rather be in the comfort of home, but no health insurance in US and I thought, no URacyst too!) I'm paying 130 euros per vial!!! That's around 200 dollars per vial!!! I have to pay it out of pocket too because medicines aren't covered in my insurance plan. Gosh now I know I can get it at home in California- I guess that helps if it works for me and I end up coming home anyway. I pray they use a 'good' catheter on me since my cystoscopy was the most pain I've ever experienced, and I have to start work again tomorrow!

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  • needsrelief
    replied
    pipkin

    I agree, the red tip cathether is very irritating. The doctor used one during my first rescue instill. my uretha was burning all day and my frequency increased.

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  • Pipkin
    replied
    I think the Stellar rep said that they were going to get another company to run another US study for them, but they are not at the stage of even knowing what the company will be. With how slowly research moves forward, I would say it would be a couple of years before one gets off the ground.

    I'm still trying to figure out why there is such a profound difference in the cost of Uracyst between Canadian provinces ($400 in Saskatchewan and $280 in Ontario). I'll update you when I get the answer. I also found that the cost of Uracyst and Cystistat is the same in Canada, yet in the UK, Uracyst is 37% cheaper. If the FDA won't approve Uracyst, then perhaps there is some way to make is less cost-prohibitive in Canada for people who have to travel up from the U.S.

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  • Jereme
    replied
    i don't understand how elmiron got approved given the dismal results of that product?????

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  • jvr
    replied
    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.

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  • Pipkin
    replied
    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.

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  • carole
    replied
    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.

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  • jvr
    replied
    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, 04:29 AM. Reason: Added something....

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  • carole
    replied
    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?????

    Leave a comment:


  • suzannes
    replied
    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

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  • jvr
    replied
    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

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  • carole
    replied
    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.

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  • Pipkin
    replied
    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.

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  • sharloom
    replied
    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.

    Leave a comment:


  • needsrelief
    replied
    wow thats alot! thanks though

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