Naltrexone
#170665 - 04/17/05 06:02 PM
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Alisa
Reged: 03/20/05
Posts: 51
Loc: Appleton, Wisconsin
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Hello to everyone - I received an email from a doctor at MAYO clinic about studies being done on Naltrexone. Unfortunately, the studies did not show any positive results regarding its affects on IBS. I am very disappointed about this result, and I thought I'd share the information with you all. I wish you all the best.
-Alisa
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I was all excited thinking that they'd finally found something that was maybe going to help us. Oh, well, back to hoping they find something else. Thanks for the info.
-------------------- Amy
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I really thought the studies were going well. That's all I've been reading is how this drug has shown promising results for IBS. What happened? Are you positive about this? What about all the positive study reports?
Now what? We sit in pain and wait more years for the next study to be done which will take years, followed by 5 years for approval? What is so hard about finding a drug that can bring some quality of life to those of us who suffer with unbarable pain and symptoms?
This is very disappointing. The thought that this drug was going to be available was helping to keep me going.
-------------------- ~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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-------------------- ~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Re: Naltrexone
#170798 - 04/18/05 08:15 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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This is awful news! I was really hoping this drug was going to help! I thought the info I found on it was pretty hopeful, what exactly did the mayo dr's say? Is there some general info you can post as to why it doesn't look good now? Did the dr's give you any alternative treatments? I've been following your posts closely and was really hoping this was going to be a good drug for us!
-------------------- Taking it one day at a time.....
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Re: Naltrexone
#170970 - 04/18/05 03:28 PM
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Alisa
Reged: 03/20/05
Posts: 51
Loc: Appleton, Wisconsin
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Hi Michele,
I posted another message about Naltrexone. I know nothing about the studies, and the doctor did not tell me anything about the results. I have received no alternative treatment advice except attending a three-week and two-week long pelvic floor retraining program and pain rehabilitation program at MAYO clinic over the summer for approximately $6,000. I'm not so sure I want to spend that kind of money...but if it means relief from this misery...who knows. I guess we just have to be on the look-out for other drugs or options.
-Alisa
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Hi Beth,
I know this news is awful. I was crushed when I read the email from the doctor (which was only a sentence long, so I don't know anything about the studies). All she said was that the studies revealed no positive results or affects on IBS pain. That's all I know. There are always other drugs being tested, though, so we have to hope that one of them will work or some other kind of treatment will help. Please do not be too discouraged about this. There's always hope. For now, we just have to be supportive of each other and share our successes and trials to try to control our IBS. I know this is hard - I'm having a rough time of it this week. My thoughts and prayers are with you.
-Alisa
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Re: Bummer....
#170972 - 04/18/05 03:38 PM
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Alisa
Reged: 03/20/05
Posts: 51
Loc: Appleton, Wisconsin
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Hi Amy,
I know this is disappointing. I'm not giving up hope, though! There are always other drugs and other treatments out there...we just have to find them. I hope you're feeling alright.
-Alisa
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I'm hanging in there. Still feeling sick most of the time and very frustrated with everything about food but trying to stay sane I never give up hope that they'll find something either, or at least that my doctor will stumble across something that's right for me. Hope you are feeling better too.
-------------------- Amy
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Hi Amy,
I'm sorry to hear you aren't feeling well. Yesterday was rough for me, and we are having a major change in the weather since spring is here. That spells trouble for my fibromyalgia and my IBS pain. I'm feeling a little better today, but as the day progresses I usually get worse. I hope you are feeling better today. I know dealing with such frustrating pain is hard...help has got to be out there somewhere.
-Alisa
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Or do you need to be seen at Mayo first?
I am in contact with a Physical Therapist nearby who treats Pelvic Floor dysfunction. I will hopefully be trying this soon. And part of it will be covered by insurance. I will go into debt for any relief for this!
Unfortunately, there are no guarentees that it will work, as there are other things going on that contribute to my pain and constipation.
Have you thought about just finding a Physical therapist in your area that treats pelvic floor dysfunction. I could give you the name of someone who might know of people in your area.
What is the Pain Rehabilition Program? Are these two separate programs? Please post info or send me an email at deerbeth@yahoo.com. I am very interested in this Alisa. Thank you so much!
-------------------- ~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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-------------------- ~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hi Beth,
I believe you must be seen at MAYO first before being admitted into their pelvic floor retraining program. Yes, there are two separate programs - one for pelvic floor retraining and one for chronic pain management. They are quite expensive, and since insurance varies from provider to provider, I'm not sure how much is covered. I know that my family's insurance does not cover much of the cost. I do know of a pain center in Neenah, WI, which is about a fifteen minute drive from where I live. I'm going to get a referral from my OBGYN next week to visit that pain clinic. They have a nutritionist, physical therapist, psychiatrist, and other doctors on staff, so it seems like a great collaboration for people in pain like us. I'll email you about the MAYO programs.
I hope you are feeling better - I'm doing much better this week, although I'm having trouble with nausea.
-Alisa
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