Cystistat Clinical Trials
Hi Everybody!
There is currently clinical trials being done across Canada by Bioniche - the makers/distributors of Cystistat. These are being done by a select few Urologists, and your GP may not even know about it. I found out be going to an IC Support Group meeting and the Director of Operations of Bioniche was the speaker. He said that there were still might be openings, but that they might close the study/trials if nobody was interested. Interested? I was, and through him I found a trial going on close to home. You have an initial consult with the uro, and if accepted into the clinical trial, you commit for 8 weeks as you will have instillations once a week for the 8 weeks (I heard that cystistat is not covered by insurance, and that it can cost upwards of $200.00 +/- each visit! This could be why not too many are willing to try it at their uro's office.) With this study you pay nada.
If anyone of you out there are getting no where with RMSO, DMSO, Elmiron, etc., and have been thinking of Cystistat - here's an opportunity!
I went to one of the uro's who is participating, (called one week and was in the next), had the consult, and a cystoscopy, and, unfortunately was not accepted into the program.
I was very impressed by Bioniche Pharma and the urologist and his staff. They are very professional, compassionate and truly care how you are, and surprise, surprise - they know IC!!!
If you want contact names and phone #'s please contact me.
KimB
Thank-you for the Cystistat study info
Hi Kim,
Thank-you very much for bringing this information to our attention. I'm sorry to hear that you were not accepted into the study program (may I ask, were you informed as to why you would not make a suitable candidate for this study?), it would have been very fascinating to hear your firsthand accounts Cystistat use, especially in a (Canadian) clinical study settings.
For those of you who are curious about it, Cystistat (hyaluronic acid) is a medication which aims to help (temporarily) replace the damaged inner GAG layer of the bladder. It's been tested on people with interstitial cystitis, bacterial bladder infections and radiation induced cystitis. Cystistat is not an oral medication. It is a sterile sodium hyaluronate solution which is administered via a catheter (usually in your doctor or urologist's office) and is therefore what is known as an intravesical instillation (also called a "bladder instillation").
The following points about Cystistat are from the ICA:
* It is recommended that the product be instilled once a week for 4 to 12 weeks and then monthly thereafter.
* Typically patients receive 6 to 8 weekly instillations then monthly treatments.
* Many patients begin to experience relief after the fifth or sixth instillation.
* Some patients who respond positively may be able to increase the interval between treatments once the symptoms have stabilized.
*Cystistat has been approved for sale in Canada since April 1999 by the Canadian Health Protection Branch as a medical device.
As Kim stated, Cystistat is made by a company called Bioniche(Life Sciences Inc), they are a Canadian bio-pharmaceutical manufacturer. If you and/or your doctors would like more information about this product, or to find out more about ongoing Cystistat studies, you can reach Bioniche at 1-888-258-4199 or by email, orderdesk@bioniche.com (always consult with your current team of doctors before applying for, or joining, any research studies or tests, in order to ensure that you are not putting yourself at risk for complications, side effects or other issues and to discuss all aspects of the proposed study and your health).
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Jessica Cangiano: ICadvice.com creator and administrator
I have IC, but IC doesn't have me!