Aa
Disappointed in VX-950
As one who will not do the SOC as it stands now, and hoping for better meds I was somewhat dissappointed in Vertex's latest web cast. They made it perfectly clear that they thought peg and riba were the lead drugs and vx-950 was just an add on.
Ron
Ron
Many people in the Prove 1, 2, 3 trials are tentative about posting any detailed information here because of the consent form that prohibits disclosing proprietary information. Paranoid that Vertex is watching? Maybe.
I too understand that I'm not in Arm C because I also am taking Ribavirin. I thought it strange that Vertex wouldn't come up with a Ribavirin palacebo to make the trial totally blind.
There's been several posts about the taste thing. For me the VX950 (or placebo) pills are bitter as hell. One night while driving home on an extended road trip with no gas station in sight I decided to brave it and dry swallow two VX950 (or placebo) pills.....wow was that an ugly experience that I won't do again! Lot's of people have reported the bitter taste thing.
There's a Prove 1 woman here who posted that her pills tasted sweet but when they unblinded her she was getting the real VX950; so go figure.
Last time I tx'd was with Peg-Intron (versus Pegasys with the Prove 3 trial) and Ribavirin and started about the same time of year. One thing that's different this time is that I itch alot and am taking antihistamines and rubbing Gold Bond on 2-3 times per day. Ir's not the crazy rash that some VXs's have reported, thank God, just sensitive to the sun and itchy.
If you are on week 7 watch postings from WC Missy. She started right at the same time.
Good luck and keep in touch.
I too understand that I'm not in Arm C because I also am taking Ribavirin. I thought it strange that Vertex wouldn't come up with a Ribavirin palacebo to make the trial totally blind.
There's been several posts about the taste thing. For me the VX950 (or placebo) pills are bitter as hell. One night while driving home on an extended road trip with no gas station in sight I decided to brave it and dry swallow two VX950 (or placebo) pills.....wow was that an ugly experience that I won't do again! Lot's of people have reported the bitter taste thing.
There's a Prove 1 woman here who posted that her pills tasted sweet but when they unblinded her she was getting the real VX950; so go figure.
Last time I tx'd was with Peg-Intron (versus Pegasys with the Prove 3 trial) and Ribavirin and started about the same time of year. One thing that's different this time is that I itch alot and am taking antihistamines and rubbing Gold Bond on 2-3 times per day. Ir's not the crazy rash that some VXs's have reported, thank God, just sensitive to the sun and itchy.
If you are on week 7 watch postings from WC Missy. She started right at the same time.
Good luck and keep in touch.
I am a new comer to the MedHelp forum and have found it to be very interesting and quite informative. There's nothing like an exchange of ideas and personal experiences that galvanize people with common issues.
Ironically, I came across this forum as a result of a Google search. I was curious as to whether there were any postings from someone commenting about the taste of a telaprevir tablet. Sure enough, there was a hit associated with this forum. With the double blinded nature of the PROVE3 trial, the interpretation of information is sparsely revealing at best. The only thing I knew with certainty was that I was not in Group C. This group does not receive ribavirin and is the only group that is not blinded. Why Vertex didn't design a placebo tablet for the ribavirin tablet, I don't know. Having received my medications on Day 1, which included ribavirin, it was clear that I was either in Group A, B, or D. What I wanted to find out is whether I was receiving a placebo for the telaprevir or the real thing. One of the individuals in this forum indicated that the telaprevir had a metallic taste. I was able to relate to that description, and began to feel somewhat confident that I was taking telaprevir. Unless Vertex purposely created a specific texture and taste in the placebo to mock the real thing, I deduced that I was in either Group B or D. I would go a step further in the description of the tablet. When placed on your tongue, the tablet immediately dissolves in thin layers that are stripped away from the tablet . It is a uniquely strange sensation that I have not experienced with any other medication. It also has a tendency of numbing your taste buds, if not swallowed in a timely manner. This is perhaps much more information than any of you would want.
I'm convinced now that I am on telaprevir because of the favorable minimum 1-log drop that I received after 4-weeks on the trial. There's no way as a previous non-responder to SOC, that I would have met this level of EVR. I barely made a 1-log drop after 12-weeks on Peg/Copeg treatment. What is interesting is that I may have approached ND after 4-weeks in the PROVE3 trial. They only tell you: A. You're still in, B. You're out, or, C. We need to perform another viral load test on you. Prior to the results, I felt like I was in American Idol.
A little trivia question for anyone out there. Why is telaprevir not capitalized?
Best wishes to all of you that are fighting to get this monkey off your back.
Steve
Ironically, I came across this forum as a result of a Google search. I was curious as to whether there were any postings from someone commenting about the taste of a telaprevir tablet. Sure enough, there was a hit associated with this forum. With the double blinded nature of the PROVE3 trial, the interpretation of information is sparsely revealing at best. The only thing I knew with certainty was that I was not in Group C. This group does not receive ribavirin and is the only group that is not blinded. Why Vertex didn't design a placebo tablet for the ribavirin tablet, I don't know. Having received my medications on Day 1, which included ribavirin, it was clear that I was either in Group A, B, or D. What I wanted to find out is whether I was receiving a placebo for the telaprevir or the real thing. One of the individuals in this forum indicated that the telaprevir had a metallic taste. I was able to relate to that description, and began to feel somewhat confident that I was taking telaprevir. Unless Vertex purposely created a specific texture and taste in the placebo to mock the real thing, I deduced that I was in either Group B or D. I would go a step further in the description of the tablet. When placed on your tongue, the tablet immediately dissolves in thin layers that are stripped away from the tablet . It is a uniquely strange sensation that I have not experienced with any other medication. It also has a tendency of numbing your taste buds, if not swallowed in a timely manner. This is perhaps much more information than any of you would want.
I'm convinced now that I am on telaprevir because of the favorable minimum 1-log drop that I received after 4-weeks on the trial. There's no way as a previous non-responder to SOC, that I would have met this level of EVR. I barely made a 1-log drop after 12-weeks on Peg/Copeg treatment. What is interesting is that I may have approached ND after 4-weeks in the PROVE3 trial. They only tell you: A. You're still in, B. You're out, or, C. We need to perform another viral load test on you. Prior to the results, I felt like I was in American Idol.
A little trivia question for anyone out there. Why is telaprevir not capitalized?
Best wishes to all of you that are fighting to get this monkey off your back.
Steve
Good post!
One concern I would have is for those who see VX as something more than it truely is and setting their hopes too high based on all the hype they see for it. The potential for emotional and mental distress would seem to be very precarious.
The other is the effect that hype'ing one possible medication can have upon the others due to the impact it can have upon the companies. It certainly would be a shame to see other viable alternatives laid aside because the company redirects it's focus elsewhere, which certainly is a possibility if the all the hyperbola impacts their net worth. Who knows, a true wonder drug could possible go undiscovered for this very reason. So it would seem prudent to keep everything in a proper perspective and not go overboard because a light of promise is seen.
Also, if I'm not mistaken, I believe the research which may be yielding a sign of a possible vaccine by gaining a better understanding is actually coming from HIV and not HCV research. I guess who cares where it comes from if it is indeed isolated, but I wonder how dilligently it is being pursued if HCV is not the primary focus of the research which may be uncovering it.
One concern I would have is for those who see VX as something more than it truely is and setting their hopes too high based on all the hype they see for it. The potential for emotional and mental distress would seem to be very precarious.
The other is the effect that hype'ing one possible medication can have upon the others due to the impact it can have upon the companies. It certainly would be a shame to see other viable alternatives laid aside because the company redirects it's focus elsewhere, which certainly is a possibility if the all the hyperbola impacts their net worth. Who knows, a true wonder drug could possible go undiscovered for this very reason. So it would seem prudent to keep everything in a proper perspective and not go overboard because a light of promise is seen.
Also, if I'm not mistaken, I believe the research which may be yielding a sign of a possible vaccine by gaining a better understanding is actually coming from HIV and not HCV research. I guess who cares where it comes from if it is indeed isolated, but I wonder how dilligently it is being pursued if HCV is not the primary focus of the research which may be uncovering it.
I am in week 8 of Prove 3.
I just want to say that the reason I come here is because of threads like this one. THis has been a very interesting read. Thanks for sharing all the great thoughts and observations everyone!
I just want to say that the reason I come here is because of threads like this one. THis has been a very interesting read. Thanks for sharing all the great thoughts and observations everyone!
The problem with Cystic Fibrosis is that it's an "orphan" disease, meaning only 30,000 kids in the US have it. The numbers are too low for drug companies to profit from a cure so they won't invest, We work with the Cystic Fibrosis Foundation who funds promising research with companies until a viable drug compound is discovered. They have funded Vertex over the past five years to screen compounds, identify and develop VX770. If it's successful Vertex will be able to make a profit because we've funded the basic research and compound development.
It's really different watching the resources pour at HCV because there's 275M people with it. Versus CF with 30,000 kids.
It's really different watching the resources pour at HCV because there's 275M people with it. Versus CF with 30,000 kids.
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