Anyone familar with URACYST-S

**bijo** · 11-20-2004, 03:37 AM

Hi! I have been having DMSO for about a year now. My last visit with the Doctor, he for some reason switched to Uracyst-S, without mentioning it to me. (I just happened to notice the bottle discarded in the basket) Usually I have to hold DMSO for at least 15 minutes, this time he seemed surprised that I was staying after it had been given. I just said if I stand up I will be unable to hold it very long. I thought he was joking. Well my question is what is Uracyst-S. I'm a little worried. I will call him on Monday but thought someone cold help me by explaining what it is. Thanks for your time. Please not also that the Doctor was extremely busy, as usual. I'm sure it was a mix up of patients, but I'm worried. Bijo

**Kathi** · 11-21-2004, 02:28 AM

It's a compound that helps people with gag liner problems, like IC. I know it's in Europe, but didn't know it made it to the US yet. He may just be doing a trial with it. It looks promising. Hope this helps, Kathi

**Myli** · 11-21-2004, 10:26 AM

Changing medications should always be discussed between doctor and patient. Medication trials usually require documentation and must be voluntary. It can't be voluntary on your part, if you don't even know that it is a change of meds nor that it is a 'trial' of a new medication. If it was given by mistake, I would be quite upset. Medical mistakes can harm you. In any case, you do need to talk to your doctor immediately to straighten this out.

Myli

**andcohen** · 11-21-2004, 02:12 PM

There is no way that this should have happened to you

Don't let your DR think this was OK either. No medication should ever be given without your consent. What if you were to have a reaction to it????
Even if this med is OK for you I am sure you would like to disscuss it first & do a bit of your own research on it before using it.
Sorry I carn't help you any more but I have not heard of it.
Good Luck
Andrea

**hankto** · 11-24-2004, 03:54 AM

I am from Canada and had great success with UraCyst-S. I am a guy who started having IC around 6-7 years ago and tried everything (Elmiron, Cystitat, herbal pills, etc.)

I started using UraCyst-S around 3 years ago after Cystitat did not work for me and was way too expensive. Within weeks I felt improvement. I was self-instilling on a weekly basis initially for 3 months then switch to monthly. I would wax and wane and sometimes have to go back to weekly. However, it lead to an almost normal life. Starting the beginning of year, I was able to stop using Uracyst-S all together and have very minimal IC symptoms since then.

I do take 2-3 Elmiron per day throughout all this time and still do for maintenance, but in all aspects (cross my fingers), I am pretty much IC free. I have been since the beginning of this year eating anything and doing wahatever I want and sleeping throughout the night. One added note, is that I have severe sleep apnea and started using a sleep apnea machine (CPAP) around two years ago which also greatly help my IC since it improved my REM sleep to help my body rebuild at night.

I highly recommend UraCyst-S, however it may not work for you. I also, highly recommend all IC sufferers to check if they have sleep apnea and get a CPAP sleep apnea machine if they do.

Cheers,
Hank

**bijo** · 12-02-2004, 06:41 AM

Thank You ALL --

My Doctor is on holidays, and so I cannot speak with him for a week, I do thank you for your replys. Also Hank, I thank you for your info on Uracyst-S, I was pleased to hear it helped you so much. I am from Canada, so it sounds like this product is available here. I will find out more and let you all know. Also you info on a CPAP sleep apnea machine, this I am not familar with, it sounds interesting.

Many Thanks,
Wishing Good Health to All!

**BT2008** · 02-09-2009, 12:41 PM

oops....wrong thread....sorry....

**bunnykinb** · 02-10-2009, 07:39 AM

If you are really worried, isn't there a doctor on call that can answer some questions? I sure hope so.

***SharonA*** · 02-10-2009, 07:57 AM

This Thread was started over 4 years ago.

**Anjita** · 02-11-2009, 11:53 AM

i have been on UraCyst (called Gepan in Germany) for over a year now and it has helped me a lot. For the first 6 weeks i had an installation once a week and then monthly. It has helped dramatically and i can pretty much have an almost normal life. Now after 1 year do 2mtsly installations.

Firstly i do recommend speaking to your doc just to make sure that he next time advises you of changing medication. I think that this was not right and legal what your doc did. But i would continue Uracyst as it might help you as well with the symptoms.

All the best.
Anja

**IcyAngel23** · 10-23-2009, 09:39 AM

URACYST isn't not available in the US by perscription yet. It's in clinical trials and I start the instills next Wednesday!!!! I'm hoping I get the actual drug and not the placebo. I'm actually thinking of going to Europe or Canada if it helps after the trial is over. I will get 7 instills one each week and then 7 weeks off. I'll let you know how everything goes for me.

**DaniMSC** · 03-31-2011, 08:30 AM

Can anyone please please tell me around which point in the Uracyst installations they began to notice improvements? I was hit with IC this year teaching english abroad in Spain, and its become the nightmare of my life. I want to go home so badly, but I finally found a urologist willing to do something for me besides prescribe me pills, and I started Uracyst two weeks ago- I've had two instillations and nothing has changed. They are also very costly- 130 euros per treatment, which is around $200 dollars for me each time!! My quality of life here is pretty bad and trying to do my job with this disease is destroying me physically and emotionally- I want to quit and fly home but I've been staying for the Uracyst! And the health insurance.

**suzannes** · 03-31-2011, 09:30 AM

Unfortunately I did eight treatments and had no results so I stopped. ICAngel23 and Caddy Fat Cat got relief pretty much right away. I'd give it eight treatments before you quit. Elavil helped me a lot. Hang in there!

Suzanne

**wtotten** · 05-02-2011, 06:16 AM

Spain person; hnag in there. It looks like a very promising approach. Please come back to this thread and let us know how it goes. If it works well for you like it did for some others here, I may see if I can go to Canada or get a "compassion" exemption from the FDA to get the drug here in the States.

Let us know......

Bill