Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 Miriam, did you notice any change in your fibroids since the study? a Miriam Goodman wrote: I got Mifepristone in conjunction with the second study done - the low dose study - which began, for me, in January of 2001. It was designed to be 6 months only, so you are correct, I do not believe that there is a current study. I have been wondering, though, about the status of the quest to have Mifepristone approved for shrinking fibroids. Re: re: Mifepristone from a > > Hi > Yes Mifepristone (RU486) is used to terminate pregnancies. How long ago did you participate in the study, and who was conducting it? From what I understand, there may not be a cuurent clinical trial in progress. If you know differently, please let me know. > Thanks, a > NPacer123@... wrote: Hi - I live in Rochester & participated in the first interview for the > mifepristone study. When I read the side effects - including possible early > abortion - I decided not to continue. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 a- For various reasons, my data wasn't used so I wasn't measured in the study itself. I did notice a change, almost immediatelly and I would swear that they did get smaller. However, after a year, either they grew again or others grew. And now, it's all academic anyway! BTW, I too am in Los Angeles. I haven't heard of anyone doing a study here, but there was a study done in the past at UC San Diego, and I believe that there may be another one there in the future. The people at Rochester told me something to the effect that the researcher at UCSD was getting funding for a new study. Miriam Re: re: Mifepristone from a > > Miriam, > did you notice any change in your fibroids since the study? > a > Miriam Goodman wrote: I got Mifepristone in conjunction with the second study done - the low dose > study - which began, for me, in January of 2001. It was designed to be 6 > months only, so you are correct, I do not believe that there is a current > study. I have been wondering, though, about the status of the quest to have > Mifepristone approved for shrinking fibroids. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 I'm not sure what you mean about there not being a clinical trial in progress. The study was from Dr. Schaff at the University of Rochester, affiliated w/Strong Memorial Hospital. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Miriam - do you know the name of the researcher at UCSD? As I live in San Diego, I'm interested in learning more about this potential new study. Thanks! > a- > For various reasons, my data wasn't used so I wasn't measured in the study > itself. I did notice a change, almost immediatelly and I would swear that > they did get smaller. However, after a year, either they grew again or > others grew. And now, it's all academic anyway! > BTW, I too am in Los Angeles. I haven't heard of anyone doing a study here, > but there was a study done in the past at UC San Diego, and I believe that > there may be another one there in the future. The people at Rochester told > me something to the effect that the researcher at UCSD was getting funding > for a new study. > Miriam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 I hope that I'm wrong. I haven't found anyone so far who knows of a current trial, but I will definitely check out the University of Rochester. Thanks for the tip. NPacer123@... wrote: I'm not sure what you mean about there not being a clinical trial in progress. The study was from Dr. Schaff at the University of Rochester, affiliated w/Strong Memorial Hospital. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 I wasn't meaning to give you the info as a " tip " , just wanted to answer your question. Mifespristone is a powerful drug. I'd rather go through a hysterectomy than take it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 In a message dated 6/1/2002 1:20:00 PM Pacific Daylight Time, NPacer123@... writes: > I wasn't meaning to give you the info as a " tip " , just wanted to answer your > > question. Mifespristone is a powerful drug. I'd rather go through a > hysterectomy than take it. > > As someone who took 10 mg of mifepristone a day for a year, I don't know what you're talking about. My fibroids shrunk about 50%; my periods stopped while I took the drug, giving me a respite from the increasing nightmare each month was becoming and allowing my body to turn back from the anemia I was developing; my kidneys, which had become dilated with backed-up urine (a condition called hydronephrosis), returned to normal as the pressure of the fibroids subsided. The only major concern I know of about taking the drug is the possibility of developing hyperplasia (a build-up of the uterine lining that can develop in an environment of unopposed estrogen), but even this is treatable. (I didn't develop it.) After my year in the clinical trial at Rochester was over, my periods returned, much lighter and shorter than they had been. I don't know (yet) if my fibroids are growing back; if they are, at least the other symptoms have not yet returned to trouble me. I bless the day I was accepted into that study; it allowed me to avoid surgery, something I strongly dread. I hope the studies bear fruit so that other women can find the relief I did. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 I would like to have other alternatives besides sugery. I'm only 34 with no kids, and am planning to have some in the future. If the Mifepristone can safely and effectively reduce the fibroids, then I'm all for it. Surgery for me is a very major step, and I don't want the side effects of Lupron. I'm pretty much asymptomatic, just frequent urination sometimes, and a little pooch, but my periods are fine and I don't gush blood. So for me I would consider another alternative. NPacer123@... wrote: I wasn't meaning to give you the info as a " tip " , just wanted to answer your question. Mifespristone is a powerful drug. I'd rather go through a hysterectomy than take it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 , do you know the ultimate outcome of the study? Are they anywhere in the approval process? I particpated in the same study in a limited way - I took 25 mg as a patient for 3 months. However, after that, I had a mildly elevated liver function test, which could have been caused by anything, and had to stop taking the Mifepristone. Miriam Re: re: Mifepristone from a > In a message dated 6/1/2002 1:20:00 PM Pacific Daylight Time, > NPacer123@... writes: > > > > I wasn't meaning to give you the info as a " tip " , just wanted to answer your > > > > question. Mifespristone is a powerful drug. I'd rather go through a > > hysterectomy than take it. > > > > > > As someone who took 10 mg of mifepristone a day for a year, I don't know what > you're talking about. My fibroids shrunk about 50%; my periods stopped while > I took the drug, giving me a respite from the increasing nightmare each month > was becoming and allowing my body to turn back from the anemia I was > developing; my kidneys, which had become dilated with backed-up urine (a > condition called hydronephrosis), returned to normal as the pressure of the > fibroids subsided. The only major concern I know of about taking the drug is > the possibility of developing hyperplasia (a build-up of the uterine lining > that can develop in an environment of unopposed estrogen), but even this is > treatable. (I didn't develop it.) > > After my year in the clinical trial at Rochester was over, my periods > returned, much lighter and shorter than they had been. I don't know (yet) if > my fibroids are growing back; if they are, at least the other symptoms have > not yet returned to trouble me. I bless the day I was accepted into that > study; it allowed me to avoid surgery, something I strongly dread. I hope the > studies bear fruit so that other women can find the relief I did. > > > > > Quote Link to comment Share on other sites More sharing options...
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