Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> General Discussion -> INX-189 Trial Participant
Post Info TOPIC: INX-189 Trial Participant
greenqueen


Guru

Status: Offline
Posts: 2282
Date:
RE: INX-189 Trial Participant
Permalink  
 

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 aww

Steff xx



__________________
Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.
bljohnston


Newbie

Status: Offline
Posts: 3
Date:
Permalink  
 

It's a fact. The first person to develop acute cardiomyopathy is deceased.



__________________
packerfan24


Senior Member

Status: Offline
Posts: 122
Date:
Permalink  
 

My wife told me she read in the paper tat they are stopping the new drug (One Pill ) because someone died.

__________________
Packerfan24
Cinnamon Girl


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

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



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Karen


Senior Member

Status: Offline
Posts: 396
Date:
Permalink  
 

Truly heartbreaking...good thoughts go out to both of you-better days ahead



__________________

Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
bljohnston


Newbie

Status: Offline
Posts: 3
Date:
Permalink  
 

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


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

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

__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Janiam


Newbie

Status: Offline
Posts: 2
Date:
Permalink  
 

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


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Hi there Janiam and welcome!  smile 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/



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
JoAnneh


Guru

Status: Offline
Posts: 1077
Date:
Permalink  
 

Jan, what a brave warrior u r in the frontier fighting for a cure!
I hope u improve rapidly with NO side effects.
JoAnne

__________________

JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Margo


Senior Member

Status: Offline
Posts: 459
Date:
Permalink  
 

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.

__________________

Geno 1b, relapsed in 2009 a week before my treatment was to be over. Started triple therapy on April 28th, 2012. UND at week 4,8,12,24,3 months post tx.
DJ


Senior Member

Status: Offline
Posts: 306
Date:
Permalink  
 

I am so sorry!  I hope they are providing medical treatment and follow up for you. 



__________________

Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
Iris Dragonfly


Guru

Status: Offline
Posts: 1170
Date:
Permalink  
 

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



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naļve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
Janiam


Newbie

Status: Offline
Posts: 2
Date:
Permalink  
 

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



__________________
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> General Discussion -> INX-189 Trial Participant
Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.