Thread: Anyone familar with URACYST-S
11-20-2004, 03:37 AM #1
- Join Date
- Feb 2002
- ontario canada
Anyone familar with URACYST-S
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
11-21-2004, 02:28 AM #2
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, KathiOne Day At A Time
11-21-2004, 10:26 AM #3
- Join Date
- Oct 2004
- Seattle, WA
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.
11-21-2004, 02:12 PM #4
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.
11-24-2004, 03:54 AM #5
- Join Date
- Nov 2004
I had great success with Uracyst-S
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.
12-02-2004, 06:41 AM #6
- Join Date
- Feb 2002
- ontario canada
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.
Wishing Good Health to All!
02-09-2009, 12:41 PM #7
oops....wrong thread....sorry....I am not a physician, so please do not mistake any of my comments as medical advice. I am just a fellow sufferer sharing my experience with IC.
Scheduled for Radical Cystectomy & Indiana Pouch, July 16, 2009
Hit with severe pelvic pain on 6/14/08 (7:05pm): GYN, MRI, CT, laparoscopy, colonoscopy: All Clear
DX'ed with Severe IC: Findings during cystoscopy and hydro-distention on 9/11/08 showed: scattered areas of hemorrhage and glomerulizations, w/bloody efflux. Update: Had second cysto/hydro on 5/21/09: My uro said "there were thousands of lesions" all over my bladder.
Current Meds: Bladder Instills (self-adm 3 x per week or PRN); MS Contin; Lortab (PRN); Zanaflex; Maxide; Estradiol Patch
Other helpful remedies: IC Diet (very important!) especially no chemical additives or preservatives; Drink 1.5+ gal. of pH neutral water per day (I test my water frequently! This is very, very important!!); Prelief; Heating pad; and lots of hugs from my wonderful hubby!
Meds I have tried, but could not take: Amitriptyline & Imipramine (both made me mentally nutzoid, gave me nightmares, and neither one touched the pain); Lyrica (didn't touch the pain either, plus it made me very nauseous after eating and then it triggered my IBS); Cymbalta (didn't touch the pain either and it made me horribly depressed--all I did was sleep and cry!); Percocet (did very little for the pain and gave me headaches); Discontinued using Sodium Bicarb & Kenalog in my instills (it burned really bad!).
Discontinued Meds: Elmiron (replaced by Heparin in instills); Bentyl (antispasmodic and anticholinergic; Zanaflex works much better for me!); Valium Suppositories
History: IBS (spastic colon) since 1982; Partial hysterectomy 1985--completed in 2002 with extensive adhesion removal (I think this surgery was my IC trigger!); Non-painful urinary frequency since 2002; No history of frequent UTI's; HPV and abnormal paps 1/07; Sporadic PFD
02-10-2009, 07:39 AM #8
If you are really worried, isn't there a doctor on call that can answer some questions? I sure hope so.bunnykinb
6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms
tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning
02-10-2009, 07:57 AM #9
This Thread was started over 4 years ago.Sharon
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
If not there, then here
Link to the ICN Patient Handbook:
Link to the IC Diet:
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
02-11-2009, 11:53 AM #10
success with uracyst
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.
Symptoms started November 2005
Diagnosed with IC in January 2007
Diagnosed with Vulvodynia 2006
Medications since July 2007: Gepan Installations now only every 2 months - Amitriptilyn(Elavil) 6 drops at night - Elmiron 200mg/day, Ranitic150 in the morning together with Desloratodine 5mg - Guaifenesin Capsules 300mg (for vulvodynia), Prelief with critical food
Vitamins/Minerals: Neutra C
Herbal Tea (Chamomille) 3 cups a day, sit baths with sea salt after sex - Hyalofemme Gel before sex - Multi GynActi Gel after sex - Macrobid 50mg after sex
10-23-2009, 09:39 AM #11
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.
03-31-2011, 08:30 AM #12
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.
03-31-2011, 09:30 AM #13
- Join Date
- Oct 2009
- Anchorage, Alaska
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!
05-02-2011, 06:16 AM #14
- Join Date
- Dec 2009
- Avon, IN
Hang in there and report back please
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......
05-11-2011, 09:41 PM #15
Just looked it up... Uracyst-S containes - chondroitin sulfate as it's main ingredient along with saline.Live Well
Anxiety, Insomnia, Chronic Sinusitis, Bursitis of the hip, Chronic Fatigue Syndrome, PFD, Inflamitory Arthritis of the neck, Allergy to Yeast and Dairy
Meds for IC:
Prosed/DS as needed which works much better for me than Pyridium, Prelief, Coffee Tamer, Claritin 5mgs and sodium bicarb as needed.
Physical therapy for 8 weeks, Acupuncture (just started).
Skelaxin (as needed)
Detrol LA (didn't help symptoms), Pyridium 200mg isn't working very well anymore.
Elmiron (Major Dizziness), Hydrodistention (Greatly exacerbated IC symptoms), Urised (hard time breathing), Ditropan (bladder pain the next day), Rescue Instillations - Lidocane, sodium bicarb (all over body rash with itching),
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By Dianne in forum DMSO, Cystistat, Heparin - Interstitial cystitis bladder instillationsReplies: 3Last Post: 12-05-2003, 10:43 AM