Announcement

Collapse
No announcement yet.

Company To Develop IC Treatment Based Upon Keay's Research

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • mightyjoe
    replied
    We went to see Dr. Hanno at HUP in Philly and she was a perfect candidate for the elavil study because she had never technically been treated before and he and the research dr also mentioned a study where all she had to do was submit a urine sample for analysis and storage at U of MD...she said ok. She was diagnosed by exclusion by Dr. Hanno...she had had about every test from every other specialty so that along with him questioning her and giving her a pelvic led to him diagnosing her (her biggest symptoms are pain, spasming, burning, and pressure)...we brought everything with us (lab results, test results, her different diaries, etc...). Not sure how long it will take to here any results but I will let you know as soon as I do...we weren't told that much except that they would be looking for markers in the urine. Anyway, we live in south jersey about 15 minutes from center city Philly so we will be sending in samples...thanks for your reply, it sounded so similar that I thought these must be the same just didn't know it had been going on for that long.

    Leave a comment:


  • slukic
    replied
    Yes indeed this is it!
    Univ. of Maryland has the hottest research right now.. she is luckly I believe that she was asked for to be part of it.
    Can you let us know - how was she recruted? How was she diagnosed?
    How long will it take them to tell her about the research results?
    (I am assuming they will confirm the diagnose showing the level of APF and the rest fo the markers)
    Do you live in the Baltimore area? or you will be sending urine samples?

    Thx! PLease let us know...

    Leave a comment:


  • mightyjoe
    replied
    My wife was diagnosed last wednesday and she will be participating in a research study involving elavil...she was also asked to participate in a study based at the Univ. of Maryland where she would give a urine sample and it would be tested and we were told it had to do with markers in the urine...I wonder if this is the same study that you guys are referring to...I think she mentioned that it has been ongoing for some time now...my wife will be sending her sample so they can use it for that study, where they will test it and store it...hopefully they can find something out with this study!

    Leave a comment:


  • slukic
    replied
    Inky,

    I saw the article - it is very academic and specific. So it will take a while to digest. I am however very much interested in connection with IC and estrogen.
    I believe my urinary problems started with my menstrual cycle irregularities which are caused by lower level of estrogen (normal still but on the border)

    Leave a comment:


  • mayray
    replied
    APF factor

    I too was in the study at U of MD and tested positive for APF factor (protein in urine). I control my symptoms with elavil but am always checking in on any progress done in this field as it would be wonderful to find out what causes the body to produce the protein. If the protein could be gotten rid of, then no more need for meds (in my case). :woohoo:

    Leave a comment:


  • wolfaleena
    replied

    Check out this link
    i was involved in a study about 7 years ago at the university of maryland (as a patient) and i met with her and part of the study was testing the urine and level of pain, etc ... and at the time she did test me for the Apf as part of the study and my urine was positive for the factor .. (i had alread been diagnosed with IC through hydrodistention some years prior to the study.
    but check out the link above . there is some type of collaboration being done with this company acologix and the university of maryland with the APF.
    That is all I know presently.
    Anyone else have any good info:
    We all could use some good news .
    Keep the Faith.

    Leave a comment:


  • slukic
    replied
    Important Question

    Jill or anybody else..

    do we know where we are standing with confirming that Antiproliferative factor (APF) is a marker of IC? How about testing it?
    A lot of experts are talking about it - Vicki Ratner for example said on the radio talk show that it should be soon accepted as a test for IC.

    What made me worried is the most recent research Susan Keay published
    on Feb 2007 "Changes in Urine Markers and Symptoms After Bladder Distention for Interstitial Cystitis. " (http://www.ncbi.nlm.nih.gov/entrez/q..._uids=17222633)

    because it said that although APF did improve after cycto/hydro the symthoms did not. Is that means we are still not on the right path?
    Is this a step back?
    And if not - why is it taking so long for APF to be accepted as a IC test?
    It is non-invesive.. much better then anything on the market...

    I am one of those that is desperately looking for a test to confirm or not the IC. I do not have bladder pain mostly urethral urgency- Dr. Moldwin diagnozed it as "non-specific urethritis"..for now.

    Please let us know!!

    Leave a comment:


  • MakinIT
    replied
    PFD: Big owie...if you have IC you prob have it and don't realize it. Pelvic floor Dysfunction. all the muscles in your pelvic floor get sore and spasm, which complicates the bladder, bowel, vaginal and sex..including even clitoral spasms..not the fun kind either (get yer minds outta the toilet) Um...they have specialized physical therapists for that...women...I've had 2 rounds in 4 years plus some general strengthening. You can read more about it further down. There is a section on it.

    Leave a comment:


  • barbour1
    replied
    What's pfd?

    Leave a comment:


  • inky
    replied
    interesting article

    hello,

    haven't been here for awhile... 99% positive i don't have ic but 100% sure i do have pfd.
    just read this thread and found an interesting link re:
    estradiol enhacing heparin-binding epidermal growth factor:



    just thought it was interesting because of all the info relating lack of estrogen and ic.

    hope everyone has a happy and healthy new year!

    inky

    Leave a comment:


  • MakinIT
    replied
    Is this APF a marker for IC or just one of the forms of IC? Just curious b/c it is such a wierd disease...Ie: mine is definately allergy related, my first uro said he had never seen so many Mast cells in 2 such small places. (biopsies..dang they hurt) Anyway, I too am curious as to how they would deliver "the goods" to us. pill, shot, cath med? (I go in for monthly cocktails of heparin, steroid, and a local numbing agent that makes it hard for me to feel when I have to pee...Thus I have to cath myself the first time after they do this, usually EIGHT hours later when the pain in my lower pelvis is so intense and I say to myself...DUH?..I need to wear a red bracelet on those days) Glad to hear we aren't forgoten but I'm sure it will be expensive and my insurance co. will love me even more.

    Tracey

    Leave a comment:


  • Claredale
    replied
    I have a question. My doctor (who I haven't seen for very long) I have been spoiled by Dr. Ragi Dogweiller for so many years, but she now lives in Knoxville. I suggested that Dr. Ragi used Valium to insert into my vagina that would help with my spasms. I noticed that I was having a problem with it dissolving and mentioned it to my doctor. He prescribed a med called Diastat Acudial 10 mg gel kit. My husband went to 4 different pharmacies trying to get it filled and was told that it was a compound and had to be mixed, but Walgreens mixed it up for him. I am to use 2 a day at $15.00 a day. If I knew that I worked, believe me, Iwould pay put when I researched what the meds do. They are for epilepsy.

    I called my doctor and of course got his assistant, who must have a problem with me because everytime I talk to her she has an attitude. I had a great relationship with my other doctor's office and always got real answers like she is in surgery, but she will let her know I called and I hope you feel better. etc. This doctor' asst called me at 5:00 today (right at closing time) I asked her if the doctor just called in enough meds just so I can see if they work. Dr. Ragi would always give me samples just because everyone handles meds differently. Today she said that she was calling in the exact amount that the doctor told her to and it was up to me to decide if it was too much or not. I know I am a patient, but I really like the doctor and I feel that he sympathizes with me, but I just need some advise.

    Thanks for your help!!!!

    Leave a comment:


  • darlene
    replied
    I was also part of the study. I sent both urine and blood samples. I soooo hope this will work!

    Leave a comment:


  • mela414
    replied
    Souds interesting. Sis they ever post the results of that study?
    7 years ago....boy!! it sure does take a long time for new treatments to finally make it to the patients. Thanks for the info.

    Leave a comment:


  • wolfaleena
    replied
    I volunteered as a patient in a clinical research study at the university of maryland where dr. Keay was researching this APF in IC patients. it was at least 7 years ago. She was tesing the urine of ic patients for this research project. So i volunteered. One of the things she was looking for was the APF. My urine tested positive for anti proliferation factor. APF.. This was a Clinical Study that i was involved in for this specifically and that is why my urine was tested for it. The doctor was doing research on it at the time..
    Then i had to submit my urine every month or week i don't remember it was awhile ago and also submit a voiding and pain diary.. If I remember correctly, I think they were looking for a correlation between pain and other symptoms and the measurement and or concentration of the APF. I can't be sure of the details of the research study, I would have to look it up.. it was a long time ago at least 7 years ago!! I always wondered whatever happened to this research... She seemed like an amazing doctor.. Well, I am sure glad to hear the news about this company wanting to pick up the ball and run with it..
    I don't know how long this will take or what they will come up with .. I just know that i tested positive for the APF and that was the last i heard of it..
    Am hoping that something really good comes of this~~
    (hoping it won't be too long)

    Leave a comment:

Working...
X