Aa
Did I make a mistake siging on for Telaprevir Study?
I took my first Injection today and I feel like I may have made a big mistake.....
I know there must be people wishing to get in these studies, and I hate to seem ungrateful, but I have been 'relatively' healthy, had an almost healthy liver and I just got rushed into a Clinical trial with Peg/Interferon, Riba & Telaprevir (the triple therapy)
My concern is that this is a study with 1 out of every 3 people getting placebo and I don't know what my rush was if I end up getting on basic Peg/Interferon & Ribavin therapy.
I have avoided this therapy for a while hoping something that was less invassive would come along. So my doctors tell me there is this new wonder drug "telaprevir" and unlike the 50/50 shot I had for Genotype 1a with standard treatment, this has shown up to almost 90% success (in fact in my hospital, everyone who tried it apparently was cleared)
BUT.... Then after I signed on the dotted line, I found out that if you take into consideration that I have a 1 in 3 chance of getting Placebo, and then realize also that the nearly 90% success is for initial response, NOT SVR, which is actually 65%
So I can do the math fairly loosely and see that a 65% SVR, with the added 33.3% chance I am getting Placebo, well, that really isn't much better than the odds of standard therapy.
One of the big selling points was that it only takes 6 months rather than a year, but it turns out that even if you get the telaprevir, you still follow through with the full year of Peg/Ineterferon
My Biggest and final worry that cropped up reading these boards, is that this treatment will cause cognitive impairment.
I can honestly say that the MAIN reason I wanted to take the plunge is because I have had this virus since I was 19, and therefore have never really known an adult life without my body being under attack from a virus (my viral load was 500K) and I just want to remember what it feels like to have a clear mind and body, for at least a little while before life passes me by.
Having lasting Cognitive impairment is NOT an acceptable cost for something that I see so many people saying they are only doing because they are really sick.
Am I just having beginning jitters or is this a valid concern that maybe I didn't research before taking the plunge.
I don't want to end up in a haze of medicine and depression, unable to discern if I have legit reasons to worry, or if this is just a 'depressive' part of the treatment and I need to power through.
My first day and I'm already confused. Help!!!!
Thanks
I know there must be people wishing to get in these studies, and I hate to seem ungrateful, but I have been 'relatively' healthy, had an almost healthy liver and I just got rushed into a Clinical trial with Peg/Interferon, Riba & Telaprevir (the triple therapy)
My concern is that this is a study with 1 out of every 3 people getting placebo and I don't know what my rush was if I end up getting on basic Peg/Interferon & Ribavin therapy.
I have avoided this therapy for a while hoping something that was less invassive would come along. So my doctors tell me there is this new wonder drug "telaprevir" and unlike the 50/50 shot I had for Genotype 1a with standard treatment, this has shown up to almost 90% success (in fact in my hospital, everyone who tried it apparently was cleared)
BUT.... Then after I signed on the dotted line, I found out that if you take into consideration that I have a 1 in 3 chance of getting Placebo, and then realize also that the nearly 90% success is for initial response, NOT SVR, which is actually 65%
So I can do the math fairly loosely and see that a 65% SVR, with the added 33.3% chance I am getting Placebo, well, that really isn't much better than the odds of standard therapy.
One of the big selling points was that it only takes 6 months rather than a year, but it turns out that even if you get the telaprevir, you still follow through with the full year of Peg/Ineterferon
My Biggest and final worry that cropped up reading these boards, is that this treatment will cause cognitive impairment.
I can honestly say that the MAIN reason I wanted to take the plunge is because I have had this virus since I was 19, and therefore have never really known an adult life without my body being under attack from a virus (my viral load was 500K) and I just want to remember what it feels like to have a clear mind and body, for at least a little while before life passes me by.
Having lasting Cognitive impairment is NOT an acceptable cost for something that I see so many people saying they are only doing because they are really sick.
Am I just having beginning jitters or is this a valid concern that maybe I didn't research before taking the plunge.
I don't want to end up in a haze of medicine and depression, unable to discern if I have legit reasons to worry, or if this is just a 'depressive' part of the treatment and I need to power through.
My first day and I'm already confused. Help!!!!
Thanks
My study nurse says there is a roll over...i even have a copy of the screening papers that say so...i even get the rescue drugs for free too and a PDA to record my pill popping
Hi MelonL,
The fact that you're writing so early in the morning after your first injection is a really good sign to me. I had a horrible first injection but I don't know if it was because I didn't follow the nurse's instructions about taking Tylenol. I was shivering, shaking and swearing I'd quit if I only survived. Tonight, though, week seventeen, I just returned from a two hour walk, using my walking poles to try to keep up muscle tone in my arms. I feel almost normal, at least for now. If you'd asked me in the first few months, I would never have believed it. It seemed like one thing after another, but somehow I stayed the course. There were some dramatic moments but mostly I felt spent and crummy and isolated.
It helps to nip any emerging problem in the bud. If you have a side effect like itching in the middle of the night, try entering the word 'itching' in the search box right on the forum page, near the top, scrolling to the right, and you'll probably get hundreds of hits with different suggestions. I'd guess Gold Bond and drinking lots of water would be mentioned the most.
Sorry I have to go to sleep now. I'm thinking of you. Our very good friends just flew out of Toulouse this morning. Do you know we are as close as can be, email each other sometimes twice a day and I've never told them I have HCV or that I'm on treatment?! My hepatologist suggested I keep it under wraps and for now, that's what I'm doing.
The fact that you're writing so early in the morning after your first injection is a really good sign to me. I had a horrible first injection but I don't know if it was because I didn't follow the nurse's instructions about taking Tylenol. I was shivering, shaking and swearing I'd quit if I only survived. Tonight, though, week seventeen, I just returned from a two hour walk, using my walking poles to try to keep up muscle tone in my arms. I feel almost normal, at least for now. If you'd asked me in the first few months, I would never have believed it. It seemed like one thing after another, but somehow I stayed the course. There were some dramatic moments but mostly I felt spent and crummy and isolated.
It helps to nip any emerging problem in the bud. If you have a side effect like itching in the middle of the night, try entering the word 'itching' in the search box right on the forum page, near the top, scrolling to the right, and you'll probably get hundreds of hits with different suggestions. I'd guess Gold Bond and drinking lots of water would be mentioned the most.
Sorry I have to go to sleep now. I'm thinking of you. Our very good friends just flew out of Toulouse this morning. Do you know we are as close as can be, email each other sometimes twice a day and I've never told them I have HCV or that I'm on treatment?! My hepatologist suggested I keep it under wraps and for now, that's what I'm doing.
I am in the same trial you are in and our stats seem to be the same-only my vl was 1,404,000. I do shot #9 tomorrow.
Sorry to hear you are off to a rough start. I am wondering if you are drinking enough water. That really helps with the sx.
Maybe some tylenol would help. I use benedryl for the itching, but you have to be careful because it can dry you out even further if you are not drinking enough water and make things worse. Check with your docs tho. Also, many here use Gold Bond lotion with good results.
Some say that the first few weeks are hardest as your body adjusts to the meds. Some say that it is harder from around week 7 as the drugs are then built up in your system. It is different for different people.
My experience so far has been positive. I have been tolerating the drugs well ,but hit a wall of exhaustion at week 4, recovered and then again at week 7. I am feeling pretty good right now, but the itchies are starting to get worse so I will be taking my benedryl real soon. Once again, that works for me, but I am not having any other problems, so maybe check with the docs before trying it.
I do wish you the best. And hope the sides get easier on you. Hang in there :-)
Isobella
Rocker-it is my understanding that they would not offer the rollover in this trial-but I could be wrong
Sorry to hear you are off to a rough start. I am wondering if you are drinking enough water. That really helps with the sx.
Maybe some tylenol would help. I use benedryl for the itching, but you have to be careful because it can dry you out even further if you are not drinking enough water and make things worse. Check with your docs tho. Also, many here use Gold Bond lotion with good results.
Some say that the first few weeks are hardest as your body adjusts to the meds. Some say that it is harder from around week 7 as the drugs are then built up in your system. It is different for different people.
My experience so far has been positive. I have been tolerating the drugs well ,but hit a wall of exhaustion at week 4, recovered and then again at week 7. I am feeling pretty good right now, but the itchies are starting to get worse so I will be taking my benedryl real soon. Once again, that works for me, but I am not having any other problems, so maybe check with the docs before trying it.
I do wish you the best. And hope the sides get easier on you. Hang in there :-)
Isobella
Rocker-it is my understanding that they would not offer the rollover in this trial-but I could be wrong
Sorry, but a P.S., How do you stop the ITCHING?!
Or maybe that's just me? But I a pacing around like a monkey with ticks :p
Or maybe that's just me? But I a pacing around like a monkey with ticks :p
I am in France in case you didn't catch that part, and all I know from the study is that after 24 weeks, if you are a responder, you are lucky and done, if not, you have another 24 weeks to go of Interferon and Ribavarin.
So every 3rd person simply gets the standard Interferon treatment that you would have taken had they not offered this trial.
I have no knowledge, nor was I told that I could try the Telaprevir if I got the Placebo, just that I would still be getting a year of Interferon/Ribavirin treatment.
In fact, all the doctors told me in the beginning how much better it was in France and that I was at this particular hospital because it's really well known for being cutting edge, and a Biopsy was not going to be needed.
But with the Vertex study, they looked at me very seriously and said, you will have to do a biopsy to take part i the study, and there is a 1 in 3 chance you will not get treated with the medication.
Thats what I understood. I could be wrong.
But when they tell you that they had a small group prior to you finish a trial, and every single one of them cleared the virus..... It's hard to say no.
BTW, I think I would be like stage 1? wasn't told, but they said I had "minimal damage" and a 500,000 viral load.
That's what I know & now you do too :)
I am feeling really horrid right now, and it's just my first day after my first Interferon injection, so the concept that it won't be a hassle, I think went out the window hours ago. It's not that I can't manage the discomfort and the weird feeling that my clothes are 'slicing into my skin', but it's more the fear of "How Long Can I Do This For?"
I mean, does it really get better?
Is the first Injection the worst?
I'm not trying to be a baby, but I can't imagine going for a year to a hear and a half feeling anywhere like I do right now.
Thanks again.
So every 3rd person simply gets the standard Interferon treatment that you would have taken had they not offered this trial.
I have no knowledge, nor was I told that I could try the Telaprevir if I got the Placebo, just that I would still be getting a year of Interferon/Ribavirin treatment.
In fact, all the doctors told me in the beginning how much better it was in France and that I was at this particular hospital because it's really well known for being cutting edge, and a Biopsy was not going to be needed.
But with the Vertex study, they looked at me very seriously and said, you will have to do a biopsy to take part i the study, and there is a 1 in 3 chance you will not get treated with the medication.
Thats what I understood. I could be wrong.
But when they tell you that they had a small group prior to you finish a trial, and every single one of them cleared the virus..... It's hard to say no.
BTW, I think I would be like stage 1? wasn't told, but they said I had "minimal damage" and a 500,000 viral load.
That's what I know & now you do too :)
I am feeling really horrid right now, and it's just my first day after my first Interferon injection, so the concept that it won't be a hassle, I think went out the window hours ago. It's not that I can't manage the discomfort and the weird feeling that my clothes are 'slicing into my skin', but it's more the fear of "How Long Can I Do This For?"
I mean, does it really get better?
Is the first Injection the worst?
I'm not trying to be a baby, but I can't imagine going for a year to a hear and a half feeling anywhere like I do right now.
Thanks again.
Doesnt this new Vertex trial have a "roll over "..meaning if you do get the plecbo drugs...they will later on give you the real vetex?...im in the Boceprevir trial 3 and they do this roll over thing
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