Cystitat - Interstitial Cystitis Network Support Forum

ethnograph · 05-07-2008, 01:45 PM

Anybody in Canada getting Cystitat as an instill? I've read good things about it but can't convince my Doc to rx it so I can get it from Canada (I'm in US).
I know I can fly to Canada to get it but that is expensive. I can't seem to find a lot of research about Cystitat.

Thanks for your help,

Linda

stef000 · 05-07-2008, 09:11 PM

I am interested in this therapy too....
I had thought my uro did studies on it but i was wrong since he was doing studies on instills with something else...Chondroitin Sulphate
but i did find this link.....
http://www.bioniche.com/news_item.cfm?id=2007
i will let ya know if i find anything else on the cystistat though...
it is a very interesting and valuable therapy i think since it actually is more like the GAG layer of the bladder...
well sorry i got mixed up n stuff but will let ya know if i find anything of value on it though...
take it easy
hope someday that we all can have relief for more than a wee bit....

stef000 · 05-07-2008, 09:16 PM

a couple other links for ya
this one has who to contact in places---
http://www.cystistat.com/en/contactUs.php
this might help ya with your doc.....all about the therapy......
http://www.cystistat.com/en/about.html

hope this helped a bit....

Mothergoose · 05-08-2008, 07:05 AM

Have you checked out if it is avaible in Canada, lots of Drug avaiable in the US are not avaible in Canada? I have never heard of this and tried to open the link the other person put in to read about it, but it wouldn't open probalby my internet. Let us all know if you find anything out about it.
Mothergoose

I just got that web site to open and it does say it is approved in Canada. Check superpages.ca look up pharmacies in Canada. Call one ask the pharmacist about it and getting it to you in the States etc. I know you will need a script for it though.

ethnograph · 05-09-2008, 05:56 PM

Thanks, everybody for your help. My doc just wrote my rx for Cystitat so I can now get it legally from the distributor in Canada. Now I just hope it works! I'll update, but supposedly it takes about 3 months.
The treatment protocol that I've read is to instill 1 vial (with lidocaine) once a week for three months, or less, if you get results sooner. I've read that people don't have to use it again for 12 to eighteen months. Then maybe just a few times.
Sounds like a lot of relief to me! Keeping my fingers crossed!

Linda

P.S. I'm a cat lover too! Check out this video http://www.youtube.com/watch?v=z3U0udLH974.
It's the cutest and great when you're feeling down.

***SharonA*** · 05-10-2008, 04:04 AM

Linda and anyone else considering ordering medications from Canada...

I suggest you do not order meds from an online site from Canada or any other country. This can be dangerous. There is no way of telling what is in the medication. For all anyone knows, it can contain sugar or something worse that could cause harm to you instead of the med that you ordered. Please don't take the chance.

blendno14 · 05-10-2008, 04:47 AM

Hi there,

Cystistat annd chondroitin sulfat = "Gepan Instill" are used in germany as kind of standard therapie for IC. I wish you good luck, some of us (incuding me)have good results. It's not a wonder drug, but used over a longer period of time it helps with the symptoms very good. ...

ethnograph · 05-10-2008, 08:28 AM

Hi, I agree that no one should buy medicine from just any old website. That is not what I am doing. My doc actually vetted the whole thing by talking to the manufacturer and the Cystitat is coming in legally and I assure it is not "sugar". I would not risk my health or that amount of money on an unknown. As Cystitat has been approved by the Canadian Goverment, The European Union, Switzerland, Denmark, Sweden and etc. and it has a higher success rate than any of the drugs approved for IC in the US, I don't think it's a drug we should write off because it comes from Canada. Don't forget that many, many seniors are getting there medications from Canada with the approval of AARP and some of the states.
And considering what happened to our heparin supply because our american importers were not taking care, I'll put my money on Canada.

Linda

Mothergoose · 05-10-2008, 09:31 AM

Hi This is to Sharona and anyone else looking at buying meds from Canada.

Thought I would add to the last post about buying from Canada, SharonA warns about buying from Canada.

Firstly: all drug in Canada go through the same approval process as the USA. Often drugs are not approved in Canada until after they have been approved in the US.

Secoundly: lots of people buy in Canada because of our drugs being cheaper, this does not mean they are an inferior drug, in any way shape or form.

Third: anyone anywhere should be careful what they buy on line no matter where it's from. Look up the site you want to buy from.

But for you to say beware you may just be getting sugar. Does that go for buying on line in the USA, I am going to order Preleif from this web site, should I be scare of what I will get get?

Think the answer is no, but not because I am buying from the USA, but because I am buying from a reputable site. So for people wanting to buy their drugs online from Canada to get them cheaper, go for it, just choose a reputable site, chose a drug store that is a chain, look it up on line, do your research as you should before buying anything.

If by some chance you get something that is not right complain right away to consumer affairs, they do not want crooks selling on line.

Another thing I think the Canadian goverment is looking at ways to stop Americans from buying prescrition drug in Canada, they think with the amount of drug being sold to Americans, it is going to cause shortages for Canadians, and is going to drive up the prices for Canadians. I don't think this is going to happen anytime soon but it is being looked at.

As for anything please shop wisely, buy from known companies, drug in Canada are as safe as in the USA.

Sharona I don't disagree with your warning totally people should beware when buying on line, but they should not right off other countries such as Canada because there are some crooks out there. They should just shop wisely.

Mothergoose

CaliAnn · 05-11-2008, 03:45 AM

Just wanted to give my 2 cents on cystistat. I am a long time user - 6 + years now and I live in the states.

I'm one of the ones that now only take it about every 18 months or so - sometimes it's earlier (12 months) sometimes later (went over 2 years once). I don't post often since my IC is pretty much under control, but usually will pipe in when the thread is about cyst. When I started, I did the following regiment:

1 instill 1x/week for 4 weeks - then 1x/month for about 4 months - that's when I felt really good. I've never had any side affects and eat basically what I want as far as my IC goes (have gerd and IBS, so that's where my diet-watching is connected with). I also don't take any other drugs for my IC, so while cystistat is expensive, it more than evens out since I don't need anything else for my bladder. I also did physical therapy for my PFD - the combo did the trick.

If you have any questions, just let me know and I'd be happy to answer then for you

ethnograph · 05-11-2008, 07:18 AM

Hi Ann,

What solution does your doctor use for the instill? Is it just Cystitat and lidocaine (with sodiium bicarb)?

Thanks,

Linda

Vicki · 05-11-2008, 02:55 PM

I got Cystistat from Canada. It came from Alveda Pharma. I got the number from another member on the site. I also was referred to Alveda Pharma but the U.S. rep for Cystistat and Rimso. The medicine was expensive and it helped me some. I won't say I did a huge turn around but it helped while I was using it. However, it did not help me to the point that I want to shell out another $1300 to do a second round. Some people are helped tremendously by it though. Best of luck to you. -Vicki