Anyone new to Cystistat?

[severtt]

I am not sure if this is the correct placement for my question within the forum.
I am sorry if I am not correctly following the procedure for this.

I thought that newbies might be more familar with this drug, since it seems to be fairly new, but not approved by the FDA for use in America, although it is used in 20 countries, including Canada, France, China, Germany, etc. I found out that the drug was given only an 8 week trial here. Everyone knows that Elim
takes at least 6 months to reach its full potential. I feel that drug company profit schemes may have something to do with it.

My main question, though, is: if your doctor writes a prescription and you receive it from Canada, will your insurance pay for it? I have read that it is very
expensive, and since it is not approved for use here, I might have to pay out-of-pocket costs. It is just so unfair. It must be safe, or 20 countries would not have approved of it, and at this point, I really need an alternative drug.

I appreciate any information about the costs involved.

[ICNDonna]

I doubt seriously that your insurance would pay for a medication that's not been approved by the FDA.

Donna

[severtt]

I feel like fighting. Elmiron, Elmiron, For the love of... can't people read?
The package insert clearly states that it works for only one-third of people.
That leaves two-thirds out in the cold. I am a fighter, I guess, and the willing acceptance of have this drug consistently shoved down everyone's throat is too much. It's OK if you try it and it works, but after a year of using it, and still having constant pain, that's another story.

If sufferers want to trudge on in misery, then don't try to change anything.
That's the best way to stay in misery. It's guaranteed. :cat:

[Briza]

severtt
Hi, I share the same concerns about Elmiron as you do. Don't feel like fighting ;) but yes my concerns are the same regarding its not so impressive research study results compared to the placebo.

I have other concerns: COST$$$$$$..... whether it is the patient or the insurance company who is paying for it and length of time needed to feel results, and again, the $$$$ invested taking it all that time for it to maybe maybe not work. Also hair loss. Yes I know not all experience hair loss, yes I know that for those who it works for swear by it and I do believe and respect that, but I have always questioned what the heck is in this med that causes hair loss...if it caused loss of fingernails possibly someone would be a bit more concerned????? For me the concern for either is the same.

:)??????????

[severtt]

I have a neighbor, who although is not very friendly, has worked at the University of Arkansas Medical Research Center for more than 40 years. He is an advanced medical technologist, but knows a lot of influential scientists there. And he told me that he had a female relative who used Elmoron (that's what I like to call it now), and he said she loss all of her hair.

I would like to find out if he can obtain information about the test(s) that were conducted for Cystistat, and assuming the NIH was involved as a funding source, peer reviews beginning for the October 1996 Councils are being asked to recalibrate their scoring by spreading their scores over a wider range of the priority score scale (Rhein, 1996). My neighbor might be able to contact a PI or coinvestigor of research funding to find out the specifics of these tests, the scores, and comments of reviewers. They would probably be able to interpret something from this as to the fairness, and how accurate or inaccurate this test was. Even if the NIH was not involved there should be database information on these tests. Even if it was a test conducted by a private company, something should be available.
I have used medical databases, but I could not even begin to assess results, since I am not a scientist.
I feel that I have to do something. People are subjected to something that they have every right to know more about, and take the appropriate action..
It certainly would be a good candidate for a grant writing tearm to apply and receive funding for. But then there's the good old FDA protecting us. Of course no one in Congress would be unethical enough to prevent this drug from being on the marketplace here. Hurdles, but I am so sick of suffering, I don't know what else to do.

[Briza]

I have a neighbor, who although is not very friendly, has worked at the University of Arkansas Medical Research Center for more than 40 years. He is an advanced medical technologist, but knows a lot of influential scientists there. And he told me that he had a female relative who used Elmoron (that's what I like to call it now), and he said she loss all of her hair.

I would like to find out if he can obtain information about the test(s) that were conducted for Cystistat, and assuming the NIH was involved as a funding source, peer reviews beginning for the October 1996 Councils are being asked to recalibrate their scoring by spreading their scores over a wider range of the priority score scale (Rhein, 1996). My neighbor might be able to contact a PI or coinvestigor of research funding to find out the specifics of these tests, the scores, and comments of reviewers. They would probably be able to interpret something from this as to the fairness, and how accurate or inaccurate this test was. Even if the NIH was not involved there should be database information on these tests. Even if it was a test conducted by a private company, something should be available.
I have used medical databases, but I could not even begin to assess results, since I am not a scientist.
I feel that I have to do something. People are subjected to something that they have every right to know more about, and take the appropriate action..
It certainly would be a good candidate for a grant writing tearm to apply and receive funding for. But then there's the good old FDA protecting us. Of course no one in Congress would be unethical enough to prevent this drug from being on the marketplace here. Hurdles, but I am so sick of suffering, I don't know what else to do.

Absolutely, explanation and input from the PI and reviewers are really helpful. With my current job, as of yet, do not write grant proposals but am frequently asked for my input for the proposals and the peer reviews.

[SharonA]

Have you taken a look at CystoProtek? There are good reports about this supplement. It does what Elmiron does, only it is not a prescription medication.

http://www.icnsales.com/CystoProtek-Algonot-Plus-p-1-c-3.html

[severtt]

The FDA and other big, lumbering bloated governmental bureaucracies just can't seem to do enough to protect us from ourselves. It is such a shame:angel

You can't fight them. It's just no use. I heard from a blogger that the FDA doesn't plan on legalizing Cystistat at all. He lives here in the U.S., but was reponding to a forum on IC in the U.K. I may have mentioned him already. I tried to contact him to find out why he had reached that conclusion; he seemed to be extremely knowledgeable on the subject, but I was unable to reach him. But it made me feel better knowing that I am not the only person to have the same thoughts on this.

[CaliAnn]

I'm in the US and have been taking cystitstat now for about 10 years - although my maintenance schedule on it is now about every 18 months - 2 yrs - ;meaning I only take it now between 18 - 24 months.

During my 10yrs of use - I have never had any insurance willing to pay for it. I pay it out of pocket. And yes, it's expensive - but in the long run, well worth it, since I hardly take it anymore and once I started feeling better, never had to take anything else for my ic.