EPIC Study Still Seeking Patients

[icnmgrjill]

IC Clinical Trial Announcement
EPIC Study Seeking Female Patients with recent onset of interstitial cystitis symptoms (12 months or less) to participate in a study from
home.

Dr. Jack Warren, University of Maryland School of Medicine, announced during
the 2004 annual meeting of the Society for Urodynamics and Female Urology
(SUFU) the beginning of the EPIC study. Dr. Warren has, for a number of years, explored potential risk factors for IC. This new study, funded by the NIH, will further that research and hopefully identify critical risk factors that
may lead to the development of IC. This is a rare opportunity for IC
patients in the USA to participate from the comfort of their home. No travel
is required. YOU MUST HAVE HAD SYMPTOMS FOR LESS THAN 12 MONTHS.
Participation includes a telephone interview and mail. Participants will
receive a small stipend of $25 for their time.

For More Information Contact:
Linda Horne
Recruitment Coordinator
University of Maryland Interstitial Cystitis Center
10 S. Pine Street
Rm. 9-00, MSTF
Baltimore, MD 21201

Toll Free: 1-877-STUDY IC (1-877-788-3942)
Fax: 410-706-4200
E-mail: studyic@medicine.umaryland.edu
Website: http://icresearch.umaryland.edu

[tigger_gal]

Jill
Thanks for the great info.....
ok ladies recently dx'ed sign up ;)
Brat

[lindy lou]

I did and have my long phone interview on Tuesday. It was easy to sign up but the criteria for selection may eliminate many who post here. I emailed the coordinator and received a call within a couple of weeks. The initial phone call was only about 15 minutes and asked questions about when my symptoms started and about my dx. They sent a packet of materials including forms to release my medical records from my doctors. Then the long interview was scheduled at my convenience.

I am really excited to do this because it may benefit people in the future by identifying the risk factors that contribute to IC. They want to enroll 800 ICers. So you newbies, sign up and see if the study can use your IC experience to help others. Is'nt that what these boards are all about?

Linda

[Imustpee]

Less than 12 months? That counts me out...there is a clinincal trial here in Seattle with a new medicine, but the side effects scared me away.

[classics]

I tried to be part of the study but was turned down. The letter I received indicated that my medical records show a history of kidney stones. I know that my ultrasounds showed a possibility of kidney stones, but my IVP didn't show any kidney stones. My urologists (two of them) never seem concerned about this. I've never had a problem with stones, no pain, or never passed one. I probably don't even have them. But if the records show another problem going on, you can be eliminated from the study.

This is okay with me. Since my IC is pretty mild compared to others (I don't have urgency and only a little more frequency than normal), I'd rather that they use subjects with more serious cases of IC. Though I do think other health concerns (the common things many of us seem to have, like IBS, joint problems, history of abdominal surgery, etc.) prior to my IC would have been beneficial to their study.

Connie

[classics]

Today I got a phone call regarding the EPIC study and they decided to let me participate afterall. To my understanding, there are many IC patients showing a history of kidney stones, and that was eliminating too many of those wanting to participate in the study. I was able to do the survey today, too. It lasted about an hour, but the time went fast. They will call me in six months to see how I'm doing. :thumbsup:

[lindy lou]

I had my hour long interview for the EPIC study last week. It was really interesting to listen to some of the questions I was asked. I don't have many of the same auto-immune type conditions that many ICers have, only allergies. Makes me wonder how connected all this stuff is. At the end of the interview, the nurse asked me what I thought caused my IC. I suspect that in my case it was estrogen loss after I stopped taking hormone replacement therapy last summer. I am anxious to see the results of this study. Maybe a cure is in the future if they can pinpoint or at least classify the different causes of IC. Anyone know when the study is expected to end or how many patients have been interviewed yet?

LInda

[kadi]

From what I understood, the study will last about 3 years. They will thaw out the urine samples in 2 years to test for APF. If you sent in a urine sample you can request to be notified if your urine contains APF. I think they said they'd be contacting us every 6 months during the study to see how we are doing & what meds we are on. Their target was to try to interview 800 patients. That's all I remember... I'm very hopeful also!

[donutgirl]

I was interviewed for the EPIC study a couple of months ago (probably close to 3 mos. now). My interview last an hr. and 1/2. I sent the urine in their container as requested. I am really interested to ask some questions of my own when they call to check up on me.

[lindy lou]

Me too. I wonder if they would send us a copy of the findings when it is published.

Linda

[ad8123]

I was disqualified because my symptoms bagan too long ago. I also have a strange family history (grandmother always passes blood in her urine and mother has a kidney disease and also always passes blood). Anyone know of any new studies, trials etc? i live in Florida.

[cyndeelynn]

Hi
I live in MD, close to Baltimore, and just called this morning to sign up. I was just recently diagnosed with IC and have only seen one ur while I was in the hospital for another surgery. They took pictures of my bladder during surgery and I have a severe case of IC. I am in so much pain. No one seems to understand how dibilitating it is! I am fghting for pain meds, being scowed at like I am a common addict. My OB actually lied to me saying my insurance co was worried about me and didnt want to give me anymore pain meds. I am really upset about that, I went to my family dr and she gave me 20 lousy pills of Hydrocodone, 5/500 , one every 8 hours PFFFT please, that dont even touch the pain, I havent had any intimate relations for so long with my husband I swear he is gonna get so frustrated and leave me. I sometimes think he dont believe me either! I am so depressed and upset about this and almost makes me think sometimes, AM I CRAZY??? :headbang:

I am glad I came across this site today and decided to read! Thank you so much for being here!
Maybe this is the beginning to finding out and figuring out this aweful condition and someday I can live pain free. I am currently on Elmiron for 4 weeks now. Praying everyday it will help.


Cyndee

[Myli]

Are you seeing a urologist who is familiar with IC? If not, you will need to find one asap. It is a constant amazement to me how little many of the medical providers know about IC and it's treatment. I would also suggest providing this website to your current doctors. Print out some of the information on the website itself and take it to them.

You are not crazy, they are uninformed. It is too bad the burden falls on you to educate them. Explore not only these boards but the website itself. There is a wealth of information here. The diet itself may give you some relief, for instance. There are some over the counter 'medicines' that may also help you. For example, Prelief or Tums and Uristat.

You are now in a very caring community. Welcome!!! I am so sorry you are having such a hard time with the pain and finding the relief you need! Lots of great suggestions are about to flood your way though and you will find a way to survive this..

Many hugs,
Myli

[cyndeelynn]

thanks for answering me! I havent seen a ur yet, I actually just made the appt today to see Dr Chai in Baltimore. I am anticipating seeing him. He deals with IC patients I was told by the foundation who is running this study on IC patients.

I have been reading on and off all day and I am amazed of the different syptoms people have and how this condition affect so many. You would think there were more Drs who are*up* on the condition and have some idea or knowledge, or at least have the decency to send you to someone who can help you and not blow you off to being someone who has too much stress in thier life ( I been told this alread) blah. If that were the case everyone would have IC!


Anyways, looking forward to reading more, and again thanks for your prayers

Cyndee ;)

[chainsaw]

I actually talked to someone about this EPIC study at the University of MAryland. I am waiting on some paperwork to arrive. Then once I get that filled out, they will let me know if I qualify for the study. You do NOT have to leave your home. Everything is done at home.
chainsaw (Kim)

[ad8123]

cyndee, Welcome! Sorry you have IC and I know you will be told this a lot you are NOT crazy. my only remaining problem with IC is pain. Pain is seriouse, be sure to learn the pain scale and learn to put it into your own words so you can make it clear to your doctors how it is for you. It does not matter if nobody else your doctor treats has that type of pain, if you have pain you deserve to be treated. You can go to a pain managment MD if it is not managed by more "traditional" IC treatments. Just do not give up. I have been diagnosed for a year, and it is hard at first, you have to learn to deal and so do all those around you. But, it gets better, I am going through a divorce (not my choice) and still, it really is getting easier. Being sick makes you relise how preciouse every moment is and it is not worth wasting on those who do not care. Everyone here understands and sympathises. Post as often as you need. I know for me, when I can tell some one else it gets better (even if the pain does not completly go away) then I feel like I am acomplishing something good.
May God bless and keep you
* Anyone who tells you IC is FROM stress, should be cursed with something terrible!

[classics]

Just wanted to let you all know that I had my 6th month (2nd) phone interview for the EPIC study.

This time the interviewer had fewer questions. I also gave a statement at the end to summarize how I'm feeling now compared to when I first had symptoms of I.C in Sept. 03. I told them I feel about 50% better, but though that sounds alot, I still feel I have a long way to go before I'm greatly improved. I told them that the Elmiron is very slow acting.

[englishteatime]

Hello, I am a new member and am looking for information. I am having surgery next week, then my doctor wants to start me on Elmiron. I am wondering what experiences people have had with this drug (side effects, etc.). Any information would be helpful!

[sheilacoito]

Hi, and good luck on your procedure. I have been on Elmiron for 5+ years. I've weaned off of it before, to see if I was cured of my IC, but quickly realize how awesome the Elmiron is. IT IS slow acting for some people, though after about a week, I can feel improvement... Some people say they lose hair, but I never have! I do bruise a little more easily, but that's something that I am willing to accept. Everyone's body is soooo different, and I hope you have great luck with the Elmiron! :)

[blondiecat]

Hello, I am a new member and am looking for information. I am having surgery next week, then my doctor wants to start me on Elmiron. I am wondering what experiences people have had with this drug (side effects, etc.). Any information would be helpful!

I too want to tell you good luck on your procedure. As far as Elmiron goes for me I am highly allergic to it and can't take it. My symptoms were purpleish-red raw swollen tongue(like raw meat), sores in the corners of my mouth, swollen throat, heartburn that nothing would touch, felt worse than before taking it, kind of like just let me die worse.

My urologist took me off of it when I stuck my tongue out at him so he could see what I had been trying to tell him all along. He told me to take Benadryl for a few days to stop the reaction. I have heard that so many has been helped with Elmiron with no crazy side effects, but me I am not one of them:(