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I'm a bit confused by the possibly-overlapping threads (rescue instillations & this one) but I'll try here.
I'm entering a one month trial (meaning me trying them, not clinical trials) with two different kinds of instillations.
I'll be getting Uracyst by catheter into the bladder once a week for a month and once a month after that. It's expensive - including the pharmacy fill fee it ends up costing almost $ 75 per - - but is supposed to actually work on repairing the bladder (not just masking pain of symptoms). Patients have to pay for the medication, but the hospital pays for their labour. I am going to hunt online to see if I can find them any cheaper. There is an interesting discussion about Uracyst in the 'rescue instillations' forum that's worth reading. So that's once a week.
Then twice a week I'll be getting heparin/lidocaine/sodium bicarbonate instillations. I think both lidocaine and sodium bicarbonate work to numb the pain in the bladder. Heparin is an anticoagulant, I'm not entirely clear how that fits as part of the instillation.
Unrelated to instillations, but at the same time I have been prescribed Ranitidene - a pill to be taken twice a day. It is usually prescribed for stomach ulcers. Another member in the ICN forum had to go off of that medication in the past because it made her so drowsy. Because of that bit of info I'm deciding to postpone starting the Ranitidene for a week or two, because I just a few days ago switched from morphine to methadone (for pain managment) to try to find something that will make me less drowsy ... and I don't want to confuse which drug is causing which effect.
The Uracyst was offered to me as an alternative to Elmiron. Like others in some of the other forum topics, I have read the research that 94% of Elmiron goes through the body with no absorption whatsoever, when the pill/oral version of Elmiron is taken (I read that the instillation version of Elmiron is muh more effective). I tried Elmiron a couple of years ago, for quite a long while, and couldn't tell any result. Here in BC it costs almost $ 1000 a year and PharmaCare doesn't think it's effective and so they will not allow that cost to count toward the 'ceiling' or Pharmacare deductible. That's a lot of money to be spending for no definite result. I asked the urologist about that last week -- he disagreed with research findings about Elmiron. He said that 70% of patients had improved symptoms when they correctly took Elmiron... he believes that some just quit after starting it for a month (the way he said it it sounded more anecdotal than evidence though, that patients only take it for a month?). Anyway these are contradictory, which makes decisions difficult.
More confusing still, last week the urologist said that since money was an issue, the other option was to do Uracyst via the instillations instead of Elmiron. I asked if it would be significantly less effective, and he said not at all. I agreed and bought the first round of Uracyst at the pharmacy... but later did the math. It's not much of a savings Elmiron would cost me almost 1000/year; Uracyst will cost me about 1300 for 13 months. Nonetheless, I still would have tried it because I haven't tried Uracyst and have tried Elmiron.
I'm entering a one month trial (meaning me trying them, not clinical trials) with two different kinds of instillations.
I'll be getting Uracyst by catheter into the bladder once a week for a month and once a month after that. It's expensive - including the pharmacy fill fee it ends up costing almost $ 75 per - - but is supposed to actually work on repairing the bladder (not just masking pain of symptoms). Patients have to pay for the medication, but the hospital pays for their labour. I am going to hunt online to see if I can find them any cheaper. There is an interesting discussion about Uracyst in the 'rescue instillations' forum that's worth reading. So that's once a week.
Then twice a week I'll be getting heparin/lidocaine/sodium bicarbonate instillations. I think both lidocaine and sodium bicarbonate work to numb the pain in the bladder. Heparin is an anticoagulant, I'm not entirely clear how that fits as part of the instillation.
Unrelated to instillations, but at the same time I have been prescribed Ranitidene - a pill to be taken twice a day. It is usually prescribed for stomach ulcers. Another member in the ICN forum had to go off of that medication in the past because it made her so drowsy. Because of that bit of info I'm deciding to postpone starting the Ranitidene for a week or two, because I just a few days ago switched from morphine to methadone (for pain managment) to try to find something that will make me less drowsy ... and I don't want to confuse which drug is causing which effect.
The Uracyst was offered to me as an alternative to Elmiron. Like others in some of the other forum topics, I have read the research that 94% of Elmiron goes through the body with no absorption whatsoever, when the pill/oral version of Elmiron is taken (I read that the instillation version of Elmiron is muh more effective). I tried Elmiron a couple of years ago, for quite a long while, and couldn't tell any result. Here in BC it costs almost $ 1000 a year and PharmaCare doesn't think it's effective and so they will not allow that cost to count toward the 'ceiling' or Pharmacare deductible. That's a lot of money to be spending for no definite result. I asked the urologist about that last week -- he disagreed with research findings about Elmiron. He said that 70% of patients had improved symptoms when they correctly took Elmiron... he believes that some just quit after starting it for a month (the way he said it it sounded more anecdotal than evidence though, that patients only take it for a month?). Anyway these are contradictory, which makes decisions difficult.
More confusing still, last week the urologist said that since money was an issue, the other option was to do Uracyst via the instillations instead of Elmiron. I asked if it would be significantly less effective, and he said not at all. I agreed and bought the first round of Uracyst at the pharmacy... but later did the math. It's not much of a savings Elmiron would cost me almost 1000/year; Uracyst will cost me about 1300 for 13 months. Nonetheless, I still would have tried it because I haven't tried Uracyst and have tried Elmiron.
With his premixed solution the lidocaine does not precipitate out of solution and it can stay in my bladder for 4 hours at a time giving good relief during that time. These are made by a compounding pharmacy and shipped to my home. The copay on these are 1/5 the copay I was paying to mix it myself.
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