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Has anyone tried this recently? What ever happened to ICLori? I have severe IC and this is pretty much the only option left on the table, so I am curious to hear from more patients who are either contemplating taking or are already experimenting with this drug. It is obviously a very scary option, but scarier still is the thought of continuing on as I am.
In particular, I have a few questions. If you know the answer to any of these please let me know:
1. I know that CyA is generally prescribed in "low" doses to IC patients. How low is "low"?
2. An astonishingly high number of CyA users experience kidney complications/failure (i.e. 30%) If you are spared from such complications at the outset, are you likely to be spared from these complications with continued use? For example, hair loss is a possible side effect of elmiron, but if you don't get it in the first 7 or so weeks you're not going to get it later on. Is that typically true of kidney failure and CyA?
3. Is the monitoring process thorough and sensitive enough to detect major complications before they arise?
It's hard to score what I have read about the dangers of the drug with the overwhelmingly positive response of some of the researchers in reported studies (some of whom suggested that it might even have the potential to be used as a "first-line" treatment). My urologist (who also happens to be in denial as to the severity of my case) said that it was a "dangerous drug", and that he would never consider prescribing to me. (I know, time to get a new urologist, but this is #4 in under one year).
Any insight that anyone has would be much appreciated. Thanks
In particular, I have a few questions. If you know the answer to any of these please let me know:
1. I know that CyA is generally prescribed in "low" doses to IC patients. How low is "low"?
2. An astonishingly high number of CyA users experience kidney complications/failure (i.e. 30%) If you are spared from such complications at the outset, are you likely to be spared from these complications with continued use? For example, hair loss is a possible side effect of elmiron, but if you don't get it in the first 7 or so weeks you're not going to get it later on. Is that typically true of kidney failure and CyA?
3. Is the monitoring process thorough and sensitive enough to detect major complications before they arise?
It's hard to score what I have read about the dangers of the drug with the overwhelmingly positive response of some of the researchers in reported studies (some of whom suggested that it might even have the potential to be used as a "first-line" treatment). My urologist (who also happens to be in denial as to the severity of my case) said that it was a "dangerous drug", and that he would never consider prescribing to me. (I know, time to get a new urologist, but this is #4 in under one year).
Any insight that anyone has would be much appreciated. Thanks
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