This is so sad to hear and it's because of brave souls like yourselves that others benefit from new treatments.
Love to both of you
Steff xx
bljohnston said
Aug 25, 2012
It's a fact. The first person to develop acute cardiomyopathy is deceased.
packerfan24 said
Aug 25, 2012
My wife told me she read in the paper tat they are stopping the new drug (One Pill ) because someone died.
Cinnamon Girl said
Aug 25, 2012
Hi there bljohnston and welcome, this is such a tragedy and I`m sorry to hear you`ve also been affected by this trial drug.
Hoping for the best possible outcome for you both, keep us updated, won`t you. All best wishes, Jill xx
Karen said
Aug 24, 2012
Truly heartbreaking...good thoughts go out to both of you-better days ahead
bljohnston said
Aug 24, 2012
I was also a participant in the inx-189 study. I was also on the highest dose of the drug 200mg. They have confirmed a diagnosis for DCM for my heart, which is dialated cardiomyopathy. I have had several 2d echocardiograms and a cardio MRI. My left left ventrical muscle has been weakened and is not pumping out enough blood. Normal left ventricular ejection fraction is 55 and above, mine was measured at 49.I have been placed on the lowest dose of carvedilol (coreg) to help my muscle relax and pump for efficiently. Fortunately i have had no issues yet. I look forward to hearing more about your situation. Best wishes.
Cinnamon Girl said
Aug 23, 2012
Really sorry to hear this, Janiam, getting short of breath so easily must be having a huge impact on your daily life. It`s good to hear that Bristol Myers are paying for all expenses, and so they should, it`s the least they can do considering that they rely on courageous people like yourself to try out their new drugs. Will you be able to claim compensation or does that not apply with trial drugs?
I do hope things will improve for you in time. Take care, all my very best wishes go out to you, Jill xx
-- Edited by Cinnamon Girl on Thursday 23rd of August 2012 07:59:47 PM
Janiam said
Aug 21, 2012
Thanks to all for your well wishes and thoughts. It now appears I may have some permanant heart damage specifically to the heart muscle. I am suffering from SOB on any kind of exertion and they have started me on several heart meds. The left ventricle appears to be leaking and causing problems. The course of treatment is to watch and wait and see if it will improve. It is all very frustrating, but BMS has been very good about stepping up and covering all expenses. I just wish I had some definitive asnwers as I am only 57 yrs old and not ready to be an invalid.
Cinnamon Girl said
Aug 16, 2012
Hi there Janiam and welcome! Really sorry to hear you were one of the people affected by this trial drug, and I hope you get some more positve news about your health soon. Do keep in touch and let us know how things go for you.
All the best to you, Jill xx
ps - Steff recently posted an article in the Knowledge Base about this trial which has now been suspended -
Jan, what a brave warrior u r in the frontier fighting for a cure! I hope u improve rapidly with NO side effects. JoAnne
Margo said
Aug 15, 2012
Hi, sounds like a serious side effect. Since it has not been approved and not a lot of studies have been done, probably they will not address that side effect but will include it in the trial. You are very brave to try it out, I hope it will resolve withOut any further issues. Keep us posted, best of luck.
DJ said
Aug 15, 2012
I am so sorry! I hope they are providing medical treatment and follow up for you.
Iris Dragonfly said
Aug 14, 2012
Hi Jan And welcome...I myself, am not familar with that trail.
That diagnosis sounds terribly scary, I'm so sorry this has happened..have they told you if there is any heart meds that will help? It takes a really strong person to go out on a limb and try something that is not approved yet, my heart goes out to you dear. Do stick around...there is some great support and information here. Blessings, Iris
Janiam said
Aug 14, 2012
I'm one of the 30 people that was in the this trial and have just been released from a five day hospital stay that has ended up with my having a diagnosis of cardiomyopathy due to drug toxicity. I am scared and don't know how much damage I will be facing for the rest of my life. I was told there were 70 people that had done this study previously with no ill side effects.
BMS Suspends Study of Nucleotide BMS094 Formerly INX189
Hi there Janiam and bljohnston.
This is so sad to hear and it's because of brave souls like yourselves that others benefit from new treatments.
Love to both of you
Steff xx
It's a fact. The first person to develop acute cardiomyopathy is deceased.
Hi there bljohnston and welcome, this is such a tragedy and I`m sorry to hear you`ve also been affected by this trial drug.
Hoping for the best possible outcome for you both, keep us updated, won`t you. All best wishes, Jill xx
Truly heartbreaking...good thoughts go out to both of you-better days ahead
I was also a participant in the inx-189 study. I was also on the highest dose of the drug 200mg. They have confirmed a diagnosis for DCM for my heart, which is dialated cardiomyopathy. I have had several 2d echocardiograms and a cardio MRI. My left left ventrical muscle has been weakened and is not pumping out enough blood. Normal left ventricular ejection fraction is 55 and above, mine was measured at 49.I have been placed on the lowest dose of carvedilol (coreg) to help my muscle relax and pump for efficiently. Fortunately i have had no issues yet. I look forward to hearing more about your situation. Best wishes.
Really sorry to hear this, Janiam, getting short of breath so easily must be having a huge impact on your daily life. It`s good to hear that Bristol Myers are paying for all expenses, and so they should, it`s the least they can do considering that they rely on courageous people like yourself to try out their new drugs. Will you be able to claim compensation or does that not apply with trial drugs?
I do hope things will improve for you in time. Take care, all my very best wishes go out to you, Jill xx
-- Edited by Cinnamon Girl on Thursday 23rd of August 2012 07:59:47 PM
Thanks to all for your well wishes and thoughts. It now appears I may have some permanant heart damage specifically to the heart muscle. I am suffering from SOB on any kind of exertion and they have started me on several heart meds. The left ventricle appears to be leaking and causing problems. The course of treatment is to watch and wait and see if it will improve. It is all very frustrating, but BMS has been very good about stepping up and covering all expenses. I just wish I had some definitive asnwers as I am only 57 yrs old and not ready to be an invalid.
Hi there Janiam and welcome!
Really sorry to hear you were one of the people affected by this trial drug, and I hope you get some more positve news about your health soon. Do keep in touch and let us know how things go for you.
All the best to you, Jill xx
ps - Steff recently posted an article in the Knowledge Base about this trial which has now been suspended -
http://hepcfriends.activeboard.com/t50404448/bristol-myers-suspends-hepatitis-c-treatment-study-cites-pos/
I hope u improve rapidly with NO side effects.
JoAnne
I am so sorry! I hope they are providing medical treatment and follow up for you.
Hi Jan And welcome...I myself, am not familar with that trail.
That diagnosis sounds terribly scary, I'm so sorry this has happened..have they told you if there is any heart meds that will help? It takes a really strong person to go out on a limb and try something that is not approved yet, my heart goes out to you dear. Do stick around...there is some great support and information here. Blessings, Iris
I'm one of the 30 people that was in the this trial and have just been released from a five day hospital stay that has ended up with my having a diagnosis of cardiomyopathy due to drug toxicity. I am scared and don't know how much damage I will be facing for the rest of my life. I was told there were 70 people that had done this study previously with no ill side effects.
BMS Suspends Study of Nucleotide BMS094 Formerly INX189