Uracyst update

[IcyAngel23]

Four months and still going well!!!!!! I'm doing instills every two weeks and feeling good.

[nottoc4]

That's good to hear.

[Snowden1]

Wow, that is so awesome. I'm glad you found somthing that works for you.:)

[suzannes]

I am glad to hear it is working for you! I will be getting some in May, I can't wait to use it.
Suzanne

[sofirus]

I am so glad that Uracyst is helping you so much , and this make me feel so hopeful that may help me too.

[snowgirl]

I am so hoping I can try uracyst and have good outcomes like iceyangel and another ICN member I read on here. too bad drug is not approved in usa. I am afraid it still needs phase 3 trial??? then fda approval= it could be years before it is approved in usa. I see why people are getting it from canada.
no script needed so why cant it be approved and usa fda gets moving on this.

[lonen86]

Hi icyangel : I'm so happy for you !!!! I'm also having a very good outcome from Uracyst . I haven't had a pain pill in years:dance: I feel normal for the first time since I was diagnosed in 2007. I only have Uracyst once a month but it works for me I wish I could do it 2x a month but is too much money. I hope and pray that it gets approved in the US soon!!!

[Goodnightmoon]

@ snowgirl: I read in a previous post (about 6 months ago??) that you can get it in the US based on what is called "act of compassion". Take the search function on this side and check it out, if you really badly want to try it!!

Good luck!

[snowgirl]

@ snowgirl: I read in a previous post (about 6 months ago??) that you can get it in the US based on what is called "act of compassion". Take the search function on this side and check it out, if you really badly want to try it!!

Good luck!

hey that is important info thank you my friend. that means then my uro may be able to get it for me based on compassion. I would say disabled due to Ic and on SS due to IC I am hoping to atleast get a trial. they did that years ago with elmiron before it was fda approved the compassion thing. thanks going to ask my uro about it at my hyrdo . vicky

[bjwright]

Hopefully Jill or someone will chime in here and give us the correct term.

Maybe I can find something on the net.

[ICNDonna]

If it's in clinical trials in the United States, it can sometimes be obtained on a "compassionate" basis --- I had a friend who was able to get elmiron before it was approved by the FDA years ago.

Donna

[Snowden1]

Yes, Donna is right. Some uros may order it for you. Many will not. I did not find one who would instil it, but that is easy because is is in a prepacked container - nothing to mix.

[IcyAngel23]

You can get Uracyst without the "compassionate need". I actually drove to canada in Jan and was able to bring it back with me. Since then more options have opened up and I thank GOD for my research. You can mail it here.
*** here isn't doing the trials correctly. There a alot of factors why they aren't getting the awesome results they should. They allow the trial drs to use any cath they want. They don't have the patients roll and change positions to coat the bladder and they only want MILD/MOD Icers. Just to list a few. I was told my IC was too severe and would mess up the numbers. They recommended it for me when it came to market here though.

I thought it was more of an FDA thing but it's not. I wanted to cry when I found out the real reason.

I was bedridden for almost five years and a simple soution has been just across the border since 2004.
Uracyst is sterile sodium chondroitin sulfate and your body should make it naturally. That's part of what the GAG layer is made of. it isn't this crazy treatment that will later say it causes damage to the bladder or other issues. You are just trying to replenish the layer. It will over time last longer with each instill.
I've been on it for over four months and still going strong. I've tried everything out there and I mean everything. Botox,cyclosporineA, interstim,PT,and the list goes n and on.

[snowgirl]

icy angel so excited things are continuing to go well for you on uracyst. i told my pain md about it and how u got off pain meds like long acting meds
i will NOT get uracyst unless my new uro says he is on board with me. he is new taking over for my retired uro - i want to do what he says is right do not want to be dismissed from his practice if he says no i talk with him i wont do it unless her approves it

i like you very excited about urascyst after having ic for 24 yr.s I am not mild to moderate IC. I am severe end stage and on SS.
bedridden been there- had to resign from my rn career of 28 yrs all that education , skills and expertise
i pray uracyst could work and change my life around.

how your job interviews are going well. i know you said to use lo fric caths.
i did not catch size as it is 500am and I have insomnia have not slept yet

thank the good lord I see sleep md wed but not sure what they will do for my sleep. I cant have ambien as i blackout , get amnesia on ambiend and next day no remeberance of what i did. scarey so talked to my mds and no ambien anymore . not sure what they can use. vicky keep in touch and progress please on ic , college and a job.

[snowgirl]

i read a post on here about uracyst 15 yrs before good old usa approves it. no i wont wait 15 yrs. vicky

[Daniela84]

Hi IcyAngel,

Where can you buy lo-fric caths? The nurses who administer my uracyst use pediatric catheters. I still have A LOT of urethra pain afterwards and all the time now. They looked inside and said my urethra is not damaged.

I wonder if they would use these catheters if I brought them to them. I DO NOT want to self-cath.

Thanks for your advice and all the best!

[ICNDonna]

If you scroll towards the top of this page and look to the left, you should find the link to information about Lo Fric Catheters, and you can order a sample.

Donna

[Daniela84]

Ok, great, thanks Donna I can see the link now.

[IcyAngel23]

Call 1-877-4LOFRIC to order them.

[suzannes]

I just got off the phone with the Astra rep(the company that makes lo-fric caths). She said that all you need is a script sent to them with the type of caths you want and how often you will use them and they will send them to you. The standard ones are $2.25, the primos which come pre packaged with sterile water are $ 2.75. They won't bill your insurance, you have to do that. She is sending me four samples today.

Suzanne

[Snowden1]

Why do you need a prescription to order these? The ones I buy here from the local medical supply store doesn't require a script. Neither do the ones I have ordered on-line. I think this is so ridiculous when you know what you need. But, I will once again call and bother my Dr. to ask her for these. I am constantly calling lately for Heprin, etc. Oh, well, what can you do. I think they need to make these things easier. I am in the middle of a move and trying to do a thousand things while I am in pain constantly. So, sorry, I'm a little cranky.

[Daniela84]

Hi IcyAngel,

I would like to order a sample of the lo-fric catheters from the website but I am unsure of which size to order--- there are 5 different choices.

Do you know which size I need to order?

thanks

[Snowden1]

Hi Daniela,
Since you are using the smallest catheters now - I would go with the smallest catheters there. You are doing the Uracyst so it is all liquid. If you were doing Elmiron you may need something larger so the particles wouldn't get stuck. But, the smaller the better is my feeling. I have had some larger ones and felt they hurt. Also called the company today.

[Snowden1]

I wanted to help everyone save time by using some general numbers for the Low Fric Catheters.

The general number is: 1-800-531-3481 push option 2 to order
Fax number: 781-890-6808 for scripts

In addition I copied the website info for mailing address, e-mail and phone numbers. I left a voicemail with my name, address and ask someone to call about my uro calling them or writing a script. What they needed. I did get the run around and the live person I got switched me back to customer service which was a recording. Good Luck.

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