New Clinical Trial For IC & Painful Bladder Syndrome

[icnmgrjill]

BLADDER PAIN?
FREQUENT URINATION?

To learn more about a research study for individuals with Painful Bladder Syndrome/Interstitial Cystitis, click here:
http://www.ClinicalTrials.com/PainfulBladder

Locations include: Anchorage, AK
Chicago, IL
Cincinnati, OH
Denver, CO
Hartford, CT
Miami, FL
Philadelphia, PA
San Diego, CA
Seattle, WA
Tulsa, OK

[Cheries]

What type of medicine is this? I was part of a study recently and want to make sure it isn't the same one.

[icnmgrjill]

This is a new trial and they've asked me not to disclose the medication but it passed my scrutiny well! They want to disclose the medication after you have contacted them.

Jill :)

[Bea]

is this considered safe.. and how promising is it

[Janie Miranda]

Jill,
I signed up for it and they called this morning and said I passed the preliminary screening but that there was no doctors within 450 miles of where I lived involved with the study. Oh well. . .
I'm doing so well, anyway that I hate to screw it up with something that might irritate my bladder but I'm always looking to get that final bit better! LOL

I would dearly LOVE to know what drug this is though or at least what it is supposed to do.

[Lyn40]

Thanks for sharing Jill. If it was good enough to pass your scrutiny, it is good enough to at least answer the questions and see if it is worth a try.


Lyn

[ICNDonna]

I saw my urologist this morning and they are checking about my eligibility --- I just did the on-line screening and it looks like I just might. I have already told them that I am willing to be a part of this study.

Donna

[massagedoula]

Because of this that I read on the link:

In recent years, researchers have isolated a substance found almost exclusively in the urine of people with IC. They have named the substance antiproliferative factor (APF) because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate that learning more about APF will lead to a greater understanding of the causes of PBS/IC and to possible treatments.

I think that maybe it is a new drug that works to help the APF!!!???
If so I would be soooo excited!

[karen10300]

I just did the online screening and they said I passed their preliminary screening. I guess I will wait now and see what happens next. I can't wait to hear more on this study.

[sister]

I also passed preliminaries. Hopefully a local Dr will be participating.

That APF thing sounds incredibly interesting. I will keep my fingers crossed. :)

[karen10300]

Janie, How long did it take for them to call you after you did the online screening?

[mallenajolie]

yipee...I qualified...

[Janie Miranda]

hi Karen,
They called me the next working day (I think). It might have been two days. It was pretty quick though. Good luck.

[IcyAngel23]

I passed the screening about a week ago and they called me the next morning. I will learn more about it when I go in a few weeks. They are in the process of setting up the trial here. I'm very curious as to what this drug is but I'm willing to do anything right now. I've tried botox before it was in trials so I guess this isn't a leap for me. I"m excited but also nervous.

[amber sevy]

I passed the on line stuff just hope that there is a doctor close enough for me to goto. I will try anything right now

[purpleviolet]

I passed it too - though when they called I asked them about active herpes and why just active and not dorment. They said because they could call me to come right away. Well noone has called me. And I wonder if active herpes screws up their test (if a test) or if the treatment suppresses immunity. PeeVee

[karen rich]

Just wanted to let enyone who is interested in this new study to ask about medications that you already take when they call you. I went in for my appointment on Tuesday. I was qualified for the study on the phone. When I went in, after filling out papers and being questioned for over half an hour. I was disqualified because I take 5mg prednisone for another disease. I just thought it was a waste of time. They should tell you which medications are not allowed before hand.

[karen10300]

I hadn't heard from the people at the survey center after about 5 days, so I resubmitted the survey. They called me yesterday while I was at work. I called them today. The nearest center to me is 2 & 1/2 hrs. away. That's 5 hours round trip plus the time there. Then they want to see you 9 times within 14 weeks or so.They told me to think about it and if I decided I wanted to do this to call them back. I'm wondering if it is worth the time and all to do this. I truely would like to be involved in something that might possibly find some answers or new medicines to help with IC. I'm just worried that the round trips might aggrevate my IC and we all know we sure try to avoid that. I'm going to keep watching this post to see if anyone gets involved with this study and hopefully they will keep us updated.

[Cheries]

They finally contacted me and told me I couldn't do the study because there aren't any here in Texas!! I was so bummed! I am trying to see if my doctor would be part of the study. I can't get them to tell me anything about this med. They said they wouldn't because they were afraid someone else would market the medication. This makes me so MAD!! It is all about the bottom line....making money and they don't care about the pain and suffering we are going through. I wish someone would tell me if this is a study about the APF factor, because that is the only thing I am really interested in.

[glenda]

i answered my own question, excuse me.

[kimberlydawn98]

:hmm: I just did the online test and passed prelimary also. I am quite sure that there will not be a place close to where I live either. But, what have I got to lose by applying right?

[Dianne]

I passed prelim but test site is 625 miles awaay so no go.

[Ronald]

Don't forget about us overseas when you find out all the fantastic wonders this new drug is going to thrust upon us all.
Iam still suffering very bad.


Ronald

[Cheries]

They told me when I called that I could have my doctor call and they would contact him or her about the study and participating. I am going to do that this week. It would be great if we could put pressure the doctors to participate and make this available to more people. I am a little concerned that this is only in a limitted amound of states. Also, Jill you indicated that it passed scrutiny. They would not tell me ANYTHING about this medication. Did they tell you more? If so, why and how did you get additional information?? I am very interested in being a part of this.

[amber sevy]

I got a call amd they told me that the closest doctor was 6 hour drive each way. so I guess that there is no way I can do this. the lady told me that if a doctor in Utah decided to come on she would call me. she also said that the only thing stopping me is where I live. :headbang: :cussing:

[charmedx3]

I called also, passed everything BUT the closest(?) is 611 miles away. if anything comes up they will call.

[allmart]

This is not related to this trial, but thought I would share something with you all that my new doctor's office wants me to be involved in. I am located in St. Louis and I think that is the only place they are doing this. This study is IC related because of the many of us suffering from IC also have IBS. There is a local gastroenterologist who is doing a lactulose breath test and is looking for IC patients who also have IBS. My understanding is they are looking for a link between the overgrowth of intestinal bacteria in IBS patients and how it may spread to other organs, such as the bladder. They then administer a current FDA approved antibiotic following the initial test and I believe retest you after the course of antibiotics to see if this will also help. My new nurse practitioner holds a bimonthly support group here in St. Louis and this Dr. will be speaking at the next one on March 16th. I am pretty sure I am going to wait to hear him speak before signing up for this. The sheet my NP gave me about it doesn't give all the info, just directions on the breath test. Once I have more information, I'm more than willing to scan the documents into Adobe and send them to anyone who might be interested.

[purpleviolet]

I'm in on the trial - Mar 1st - first blood screening tests. This isn't something so new that it hasn't been published about already and I'm studying about it. I'll post more later. PeeVee

[Lyn40]

I received a call from the Pharmaceutical Co. that set up the online screeing. She said the doctor's office in Philadelphia is working on setting up a new office for this study and would get back with me in about a week when they are ready to begin. That is all the info she was able to give.

Lyn

[Jean12]

I passed the screening also. With any luck there will be someplace close enough. I'm running out of options.

Jean

[Katrina]

I passed the screening but they said closest place was in Illinois...good luck to all that participate!! :)

[KarenIC]

Hi Lyn40,

Do you know the name of the doctor in Philadelphia who will be conducting this study? Did the doctor relocate her practice entirely, or just set-up a new office for this study only? You probably don't know. I'm just really curious because I see a doctor in Philadelphia where I'm enrolled in a clinical trial and the doctor has put a hold on my clinical trail for the past 3 months and I haven't been told the reason why. I wonder, now, if it's because my doctor was relocating her practice?

I would really appreciate any information you can give me about the doctor conducting your clinical trial and if this doctor has moved the entire medical office to another location.

Thanks so much for your help and good luck with the clinical trial!

Take care.


KarenIC

[sweetangel2080]

what medication is it? does anyone know now?

[karen10300]

I was told that it was an oral medication, but that's all I was told.

[gg56pa]

Hi Lyn40,

Do you know the name of the doctor in Philadelphia who will be conducting this study? Did the doctor relocate her practice entirely, or just set-up a new office for this study only? You probably don't know. I'm just really curious because I see a doctor in Philadelphia where I'm enrolled in a clinical trial and the doctor has put a hold on my clinical trail for the past 3 months and I haven't been told the reason why. I wonder, now, if it's because my doctor was relocating her practice?

I would really appreciate any information you can give me about the doctor conducting your clinical trial and if this doctor has moved the entire medical office to another location.

Thanks so much for your help and good luck with the clinical trial!

Take care.


KarenIC



Hi,

I believe that the clincial trials are taking place in Philly at Graduate Hosp in doctor Whitomore's Office. They are studying Prelief.


gg56pa

[Jean12]

i got my call from the pharmaceutical research company today. They are forwarding my information to the nearest dr. His office is 64 miles - close enough for me to get to okay. I should be getting a call from his office withing the next 2-3 business days. Wish me luck

[Cheries]

I hope we find out soon what this medication is. It isn't the prelief is it?

[celine]

I still havent gotten a phone call after 4 days. Should I resubmit?? I really want to know more about this and be in the trial if I can.What to do?! Wonder if there is any near Iowa.? Celine

[Lyn40]

Karen,
Ths study is out of Dr. Whitmore's office. I was told, they are setting up a special office just for this study. So her office is staying where it is.

I sure hope the study is not prelief. I am looking forward to trying something new.

Lyn

[karen10300]

Celine, I would resubmit. That is what I did when I didn't hear from them after a few days. They called me the next day after I resubmitted.

[Janie Miranda]

oh no, I too hope it isn't prelief. I think most people already know if it works for them or not and unfortunately It makes me sick to my stomach to take it so I have to take TUMs. I am hoping they are trying out a new medicine!

[windwalker]

I know the med will deal w/the APF but what it is I am not sure, I got a call today because I filled out the survey, but the closest to me is 300 miles away in Ohio :( I was bummed, really wanted to help out on this. Well whoever gets in, I hope they get good results :D

[KarenIC]

Hi Lyn40,

Thanks for letting me know where this study will be conducted. But now, I'm really confused. My OB-GYN told me in December that Dr. Whitmore was looking to relocate. Therefore, I assumed that this was the reason why my clinical trial was put on hold for 3 months now. I'm enrolled in the nuerostimultor (Bion) study. But if Dr. Whitmore isn't moving, then I really have no clue why they have been making me wait ( in alot of pain) for so long. I don't know what to think now.

Anyway, thank you so much for the information, and best of luck with the new clinical study. I really hope it works for you. Keep us posted.

Take care.

KarenIC

[Lyn40]

Karen,
I'm not sure what to think either. I could have misunderstood the new office situation. But that is the way I understood it. Who knows?

Best of luck to you,
Lyn

[celine]

Karen, thanks for the answer. They called today and left a message. I will call back tomorrow. Hope and pray I can do this. And I hope it isnt Prelief. Already tried it. Certainly not for pain! Celine

[Dianne]

Why would they trial that? It's not for pain.

[bellaluna05]

It was probably a waste of time for me because it doesn't look like there are any doctors in LA doing the study, but I did the survey anyway,maybe my doctor could join the study. didn't it say before the survey something about the APF factor, so why would it be a trial for prelief, that isn't a new medication and the survey said it was a new medication. Does anyone know what it is for sure???? They probably won't approve me because my bladder and urethra are supposed to be removed in a month and a half, but I still dream about a miracle that will save me from surgery. Does anyone know if they would take someone that has had reconstructive surgery on thier bladder? My bladder was ruptured and half of it died and had to be removed and replaced with part of my intestine. My IC is the most severe I have ever heard of, even before this happened every doctor couldn't believe how bad I was and would always say I was the worst they have ever seen, then that happened and now doctors are afraid to treat me, my current urologist won't try any medicine he says my bladder is too far gone and just needs to be removed along with my urethra, but I am so terrified of the surgery and I dream about a medication that could reduce my pain so I don't have to have surgery again. Probably stupid but if nothing happens in time my bladder and urethra will be removed march 24th, till then I will try anything!
If this is for preleif though it would be a waste of time for me, if it is something for the APF factor I will beg my Doctor to participate!
If any of you know please tell me,Thank you so much,
Lara

[karen10300]

I go to my doctors Monday and I'm going to ask them if they know anything about this trial. Also going to ask them if they can check about participating in it.

[KarenIC]

Hi Lyn40,

I'm so sorry. I just saw your private message to me from Thursday (2/16).

I've been seeing Dr. Kristene Whitmore in Philadelphia for the past 4 years now. I think she is wonderful! She is an excellent physician and really tries to help her patients. I'm in the Bion clinical study right now, waiting for the study to resume. The Bion is a neurostimulator implanted near the pudendal nerve. It has really helped me with my frequency/pain and PFD (Pelvic Floor Dysfunction) and I'm really anxious for the study to resume.

Good luck with the new study at Graduate. Give Dr. Whitmore my regards!

Take care.

KarenIC

[karen10300]

Has anyone found out or heard anything more about what this trial is about?

[CudaGirl71]

Hi, My Urologist told me about a new medication that is still in trials. Although this treatment is not for IC He said there was success in about 2 people who had IC. He asked me if its something I would consider. Now let me tell you what it is. He told me that it is BCG. It is a form of Tuberculosis and you have a 1% chance of it getting in your bloodstream and actually contracting TB. I am not comfortable enough to go ahead with this. He sounded kind of upset because I did not want to do this. I dont know about anyone else but I dont want to put myself in harms way for a chance to get another disease. Does anyone think that I'm being unreasonable?? :shake: I'm just looking for opinions...And in saying this about the BCG, I'm not saying that this is what this particular trial is about that everyone here is talking about. I'm not out to scare anyone just wanted to let everyone know what else is out there and to get a few opinions.... :pray:
Thanks,
God Bless,
CudaGirl71

[CudaGirl71]

Please forgive me, I just looked at the topics on the message board and boy do I feel like a dummy!! There is a topic about BCG.......but if anyone has an opinion I would still like to hear it......Thanks!!
CudaGirl71

[ads]

Everyone should remember if this is an appropriately conducted medical study, there will be a placebo. So you may not get the medication, just a sugar pill. I would continue with any treatment you can find until you know this is the direction you want to go.

ads

[Lyn40]

I just received a detailed outline (10 pages) on what this study is. It is an oral drug that will be taken 3 times a day for 12 weeks. The drug does not have a name. It is called "YM672'. It is an investigational drug, which has not been approved by the FDA. It has been studied and approved in Japan for the treatment of bronchial asthma, allergic rhinitis and atopic dermatitis. It is therefore, an anti-allergic agent and its anti-inflammatory effects are expected to also be effective for IC.

The remainder of the outline explains what is required of me as a participant.I wish I knew more about this drug. Does anyone know if there is a way to read up on the studies done in Japan? Does the drug have a name over there? I will be calling my study center this week with further questions before deciding on whether to participate.

Best of luck to all those who take part in this.

Lyn

[Dianne]

Wouldn't that just be like Singulair?

[purpleviolet]

Just before I went to Hawaii they called and cancelled my firt appt for the trial. I had passed the initial screening but then when she callled she asked if I had had herpes in the last 90 days and I said probably, so she axed me. Darn. Then she said there was another trial (2 trials?????), but I was axed from that too. Darn! Anyway this is another one of those Japanese drugs that has been tested for asthma so it must be similar to Singulair, but obviously not the exact thing. Singulair I tried for a few weeks with no response so maybe this wouldn't worked anyway. I'm trying to cheer up. Maybe I'll try cytotec instead. PeeVee

[Shehorst]

I found this on http://www.ichelp.com/cafeica/Vol05No09.html about a drug that has been approved in Japan and is being used for asthma. If this is the right clinical trial, it is under The Latest IC Treatments in Development. It is the oral drug, suplatast tosilate (IPD-1151T), and is already on the Japanese market and is indicated for asthma and allergies. There is a direct link to the company at the bottom of the blip. Hope this helps.

Sherry
:cat:

[rubymermaid]

So the medicine is effective in controling asthma also helped people with IC? I really wish I could have got into this study since I have both asthma and IC!

[lrogrn]

Does anyone know if there is a time frame as to when you can start this trial group??? I actually received a letter from my uro's office but I have yet to respond. I live in Tulsa and I only live 15 miles away plus I work in Tulsa so it would be so easy for me. I filled out the questions and made it through that but I don't know if I can still participate. I am going to call their office Monday. Keep you fingers crossed for me. I would like to do this to see if they can help all us ICers.

[mdj]

I went to see my new uroligist/specialist in Tulsa and what a God send! :angel: He did another cystoscope & dystenion, came back as severe ( yeah, yeah.. nothing new) Gave me the forms to go over for the trials, just have to decide between this trial or another one, or the interstim... this one looks good though, and they seem to have it together!Trials are a crap shoot though, you never know if you are getting the real deal, or the placebo.... and then once the trial is over you have to realize that you may go back to the instinsitiy you were at prior to the trial. Not being pesimistic, just food for thought, especially when there is such great distance for me to go. It is just a long 6 hour drive, that is a lot of pee- pee stops :loco: :toilet:
good luck to you all! :grouphug:

[allmart]

I want to apologize to everyone for being so busy and not posting about this sooner. I attended the St. Louis IC Support Group last week and our speaker was Dr. Leo Weinstock of Specialists in Gastroenterology. He is currently doing many different studies and clinical trials on Xifaxin (sp?), an FDA approved antibiotic that is used for traveler's diarrhea in the US. It has been approved in Europe for 14 years and in America since 2004. He is very interested in IC patients that also have IBS, among other ailments like Fibromyalgia, etc. I very much enjoyed his presentation and excited to know that there is someone out there trying to find the links between the syndromes, diseases, and disorders many of us have. He has had great results with the antibiotic in the use of overgrowth of bacteria in the small intestine. I would like to give you all his contact information, but I'm not sure if that is against the rules on the boards. As long as I get the ok from a moderator to post it, or if you want to pm me, I will send you the info. He is located in the suburbs of St. Louis. I do know some of the clinical trials he is participating in is in cooperation with Dr's across the country. I spoke with a patient of his at the meeting who is also a patient of my wonderful urologist, and she said she absolutely loves him. She has severe IC-has interstim-and said he seems to really care about his patients. Anyway, please let me know if it's ok to post or send me a message and I will get you the info. I will try to remember to get the handouts scanned in so I may send those to all who request it. You are welcome to e-mail me if my pm's get jammed by too many responses.

[TerriT]

I filled out a survey for a study at http://www.bladderpainstudy.com a couple of hours ago and I was just called by the Doctor's office in my area, that is taking part in the study. Talk about quick processing. I have an appointment for April 12, that is when I will be given all of the information. This is the first one I have seen that has a dr. in the Portland/Vancouver area participating. I will fill everyone in after my appointment.

[Oxana]

This is very interesting, Terri!
Please keep us posted.

[IcyAngel23]

Well I'm not sure if anyone else posted this yet but I'll do it anyway for those who don't know. I was sent the info packet about the meds for this study. It is an asthma med being used in Japan that they are trying it on IC patients here in the U.S. From what I've read I'm going to go ahead with the trial. So wish me luck.

Kristin

[TerriT]

I went to the Doctor yesterday and they went over the questionares
that I filled out then I had to get bloodwork and urinanlysis tests done :woohoo: . I go back in about 10 days and if everything is ok I will start the testing. According to the paperwork, 2 of every 3 people will get the drug as this is phase III.

Terri

[Vampireness]

Good luck to all doing this tests, very brave!!!!

Keep us posted on the outcome, thanks!!!

[Prinny Joy]

While sitting in the Dr. ofc. Had to go all the way to Tuscon and it was well wroth it. There is a Brand New Machine that was approved the day I was sitting in the Dr. ofc. I'll be the first IC patient to get this machine and am sooooo thankful. My Inetrstim has two leads, this machine has 12. This gives me so much hope and I am so thankful. I may actually teach again one day! Thank The Good Lord for that. My advice is travel as far as you can if you cannot find a Dr. well suited for you! This is GREAT news for myself and my family. YIPPPEEEEEEE, I'll be the very first one!

[Jade716]

sounds wonderful! Whats it called and what does it do? Please keep us informed.

[tigger_gal]

Is this the study for MN-001? this is where they are conducting a trial to evaulate the effectiveness of an asthma like medication.
or for ICCRN where they are enrolling patients to do a study to help the immune system for people with confirmed IC?
I just got a news letter from my uro, and it was sent out to IC patients.

[Prinny Joy]

The one that I'll be the very first to get, (I'M HAPPY) is for pain. It has been approved for other diseases and is twice as big as interstim and has 12 leads instead of two. I'm very excited and step one is remove interstim, that I'll have done on May first and then the process will continue. It's a machine of sorts and this gives me so much hope since pain is the issue for me. W/ Interstim removed I was told the symptoms, frequency and such will be worse before I get the new machine but I'm hopefull. In a nother week when I go back and learn more will keep you posted. I am just counting my blssings for being right in the ofc. when the FDA approved it. WIll let you know, PEACE - Loretta

[dancemomof2]

Prinny..........is this the BION. If so this is not for pain either but basically the same concept as Interstim. Curious to know what your getting for the pain inplant with 12 leads.

[Prinny Joy]

What I'm getting is brand new so I can't even tell you the name yet. It is only for pain though. I know it is used for other diseases for pain control and am praying so hard that I will be able to LIVE again. PEACE

[Kiernan]

Question about Bladder Q?

Has anyone used this product for sometime and had good results? Also, can you take this in addition to Elmiron? Any comments would be appreciated. Thanks

[purpleviolet]

Strange place to put bladder-Q question. But I took almost 3 bottles worth and returned it to the company because it didn't work. However, they were extremly professional and returned my money pronto. I applaud a company for doing that. You have got to buy from them to do this though. The main ingredient is quercetin and you can get high quality quercetin for less anyway. Just make sure it has something special so that it can be absorbed. Worth a try if you haven't tried quercetin. Other allergy type herbs are rosemary and butterbur (requires processing) and stinging nettle, but I'm just giving info, not endorsing. PV

[Vampireness]

What I'm getting is brand new so I can't even tell you the name yet. It is only for pain though. I know it is used for other diseases for pain control and am praying so hard that I will be able to LIVE again. PEACE

I wish you the best Prinny, keep us informed!!!

[purpleviolet]

Hi - I've been looking for info on this trial. I know it's closed and I was disqualified for herpes. I wonder if anyone knows the duration of the trial? Has anyone started it and felt anything different? Ofcouse anyone could also have the placebo. I look forward to the results. PV

[Prinny Joy]

Not sure what MN is????? I had the ANS trial, I know that isn't placebo. Are you talking about medication? Sorry for the ignorance as I don't know what this one you're talking about is but I will pray you find something! God Bless You!

[adler17]

I dont know what I have but I figure I can ask. Back in July I woke up out of the blue feeling like I had a UTI.. long story short my cultures were clear. I went to a urologist who treated it as an Overactive Bladder. The medicine wasn't helping so I went to another doctor who gave me a bladder test(filled my bladder with water to see how much I could hold). I held a decent amount and he noticed I did NOT have an overactive bladder because the muscles were not triggering. My symptoms include feeling like I have to urinate but that is all. I have no pain at all. He said it may be an irritation in the bladder neck and gave me urised a few times a day and I am taking 10 mg of Elavil at night. I can wait a few hours before using the bathroom and I dont have pain but still the pressure. I also had a gyno. ultrasound(internal and external) and they were fine.
Do people have IC and have no pain? I dont have other problems (IBS etc) and so I am so confused and just want to know what is going on!

[IcyAngel23]

I'm not sure MN001 is closed yet. I was just asked to take part in it a week or so ago. They might be on the next level of trials. I'm on Cyclosporine A so I can't. Works well for me so far.

[Prinny Joy]

Yes, you can have IC without the pain stptoms. When it first started for me it took a year of frequency/urgency before I started having pain here and there and then ultimately years later, almost daily. IC takes root for many years before the symptoms can ever be detected in some people, although when I look back now through the years I believe I've had it for over 20 years but took me about 10 years ago to get diagnosed. Hope it helps, Blessings

[jah]

Help, the link will not work for me....is there another link?

BLADDER PAIN?
FREQUENT URINATION?

To learn more about a research study for individuals with Painful Bladder Syndrome/Interstitial Cystitis, click here:
http://www.ClinicalTrials.com/PainfulBladder

Locations include: Anchorage, AK
Chicago, IL
Cincinnati, OH
Denver, CO
Hartford, CT
Miami, FL
Philadelphia, PA
San Diego, CA
Seattle, WA
Tulsa, OK

[Gail]

Help, the link will not work for me....is there another link?

This is the latest information I could find. Good luck!:hi:

http://www.clinicaltrials.gov/ct/gui/show/NCT00295854;jsessionid=C6491B63A5F906DEAFEAD3B243B01602?order=5

[~*~Christine~*~]

Good luck to everyone on the trial, keep us posted!
I'd do it too but I live in Canada

[lauraheather]

Hi, I was reading a post about xifaxin. My doctor put me on it about a month ago, and I am better. He is excited thinking that this may eventually be a drug used to help IC. Is anyone else out there on this, and what do you think?

[Dianne]

Could you elaborate on this more? What it was prescribed for and how it has helped your IC? Is this more an IBS drug that incidentally helped your IC? As a nonresponder I'm always interested in anything out there that would give me a life again.

[lauraheather]

It was actually prescribed for my IC. My doctor had been to a lecture on it and had talked to another doctor who had heard it may help IC patients. It is actually a drug used for traveller's diarrhea. It seems to be a low grade antibiotic, all though I am not 100% sure on that. I looked it up on medlineplus.gov. "Rifaximin is used to treat traveler's diarrhea caused by certain bacteria. Rifaximin is in a class of medications called antibiotics. It works by preventing the bacteria from growing inside the intestine (gut)." This is a quote from the website. My doctor tried it on me, and while I am not sure if that is what helped, as I was on urispas and UTA as well. But I know that I am definitely better. He said today that it takes about 3 weeks to be fully useful and you can be on it for a long time w/o problems. GI docs are using it to treat IBS, which I have as well. And it does help my IBS symptoms too, but it was initially given to me to try it for my IC. I hope that helps. And I hope you find answers soon. I haven't had any side effects from it, so maybe you could just try it to see if it works.

[Dianne]

Thank you so much. The reason it interested me is because originally the only remissions I could get were with courses of augmentin or Cipro. I don't really believe I had an infection going though. I think it was the anti-inflammatory effect but it is quite curious. I can no longer tolerate augmentin without pain I think because of the sodium. I take a Cipro every 3rd day and it's the only thing that makes life livable. What I found interesting when trying to research this online is that it's used to treat cryptosporidia. My brother was an AIDS patient with severe crytpsporidia and I was his caregiver. My IC started 3 mos. after he died. While I don't have diarrhea and I don't have an IBS diagnosis, it did peak my interest. What color is it? I can't tolerate red/yellow dyes, they make me itch. Capsules sometimes I can transfer to a plain gelatin cap. What dose were you put on and I'll take that in to discuss on next appt.?

[lauraheather]

Unfortunately, it is orange, but who knows, the pharmacy may be able to get it in capsule form. Mine are just pills. I take 200 mg once a day. I normally take it in the morning, but I guess it doesn't matter. I have been on it for three weeks. And I have gone from being in such severe pain that I needed ER and morphine to being able to function with low pain that needs no pain pills. My bladder still hurts, and I still have some frequency, but it is minimal. I feel bad telling you this, b/c I know I probably have a milder case than you, but I hope it helps you too. My doctor was really excited thinking that this is working. Interesting that an antibiotic works and yet they say we don't have any infection?

[Dianne]

Wow that's great. What is UTA? I used Urispas when I was having urethral spasms but I don't have those now as long as I take calcium lactate. I'll check out the colors on the various strengths. Any pain relief at all would be so welcome. I can't even tolerate pain meds. When they hit my bladder I hurt even more than I already did. And yet 12 hours after a Cipro I'm better. But if I take it more often than 1 every 3 days it gets worse. This makes no sense to me. I don't fit into any category and my case just isn't like anyone else's that I've found. I sure appreciate the lead. When I talked to Kevin the pharmacist that was mentioned on this site, he suggested I start looking in the IBS drug category since I've done every single treatment or drug including botox that's out there.

[lauraheather]

UTA is the same as pyridium only it is blue colored, but it doesn't tinge contact lenses. I have had a lot of eye trouble and only have one eye that works, so I have to not ruin my $120 per lens contact. I think pyridium is more effective, but....

Hope the rifaxin works for you. I am so glad to have a good primary care doc. Can't find a uro for anything, but.. I guess you take whatever you can get. Hope it helps, I really do. I wouldn't wish this on anyone.

[Dianne]

Ok thanks. The blue dye drugs actually made me worse because of the hycosamine in them is best guess. Do you have a link to the study anywhere of this drug as it relates to IC? I couldn't find one. Is the thinking if it works, that you would be on this indefinitely?

[Dianne]

LauraHeather, do you have any idea where I can get more info on this lecture your Dr. heard or even a contact name or something? This interests me but I need something concrete before I go "drug seeking". LOL It's kind of a joke at the Drs. office when I find something new I call and say "ok I'm drug seeking" and they'll tease back and say "ok what are we seeking today?" I haven't had any luck turning up anything.

[Dianne]

Yeehoo LauraHeather, any idea how I can find out a contact name, study, anywhere I can read about using rifaximin as a possible IC drug? My PCP gave me a rx. for it today in case I want to try but I'd still like to hear more. Anybody ever hear of using this for IC too?

[lauraheather]

Sorry, I really don't have any idea about that. My doctor just knew about it and I tried it. I have googled it alot. Xifaxin and IC. That is about all I know. Sorry

[Dianne]

Ok thanks. I tried googling those too and I never found anything. If you come across anything, let me know, thank you!

[Dianne]

Just a follow up - I didn't make it past the first rifixamin. The pain was incredible starting about 2 hours after I took it and the flare lasted more than 24 hours which is unusual for me. There just doesn't seem to be any oral meds. that I can handle after they hit the bladder even though this one is supposed to stay in the gut, my bladder never got that message.

[lauraheather]

I'm so sorry to hear that. I hope that there is relief for you out there somewhere. I was hoping so much that this would help you.