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
I was in the trial for combo therapy (interferon / riba) in '96 at Mayo Clinic. It literally saved my life. It was also an awful experience. And "chemo fog" was a factor with brain functions then. May have lost a memory or two - but I have also had a great time with my son and family that looked rather bleak 12 years ago .....its only normal to be afraid of the unknown....get it done before the liver damage progresses...
I appreciate your comment, and you are probably right about getting it now before it causes more damage, but I do have a question about what you said.
You say (probably a little sarcastically) that you may have lost a memory or two
But honestly, do you feel that you sustained any impairment? That could mean, not as good at remembering things, or bad short term memory, or suddenly became terrible at scrabble ;-)
Point is, I am curious about this from anybody, because having my mind as sharp as can be is so important to me. I am trying to get the college education I never got and I don't see myself doing that in a 'Brain Fog'
Thanks
You say (probably a little sarcastically) that you may have lost a memory or two
But honestly, do you feel that you sustained any impairment? That could mean, not as good at remembering things, or bad short term memory, or suddenly became terrible at scrabble ;-)
Point is, I am curious about this from anybody, because having my mind as sharp as can be is so important to me. I am trying to get the college education I never got and I don't see myself doing that in a 'Brain Fog'
Thanks
I really don't think you'd be having any less jitters if you just did standard SOC. It's a very scary concept injecting yourself with meds that potentially could make you quite ill....wondering how you will feel what will happen will you succeed on and on and on.
You just have to jump, get over it and then get on with treatment. In time this will happen. You can't guarantee what will or will not happen. Can't guarantee if you will get 'brain fog' or not really.
You just have to take it easy and take it one day at a time. Most of this treatment is one big giant waiting game.........we're always waiting on something - whether it be your first PCR test results or your final after treatment SVR results.....waiting and worrying is very common.
All I can tell you from my own experience and pains and fog and discomforts is that I treated for 72 weeks. Had good days/times and bad days/times. Rest is important. Knowing as much as you can find out about HOW To manage the side effects (proactively and after the fact) is the BEST thing you can do to help yourself.
But it works. Almost two years later and I'm still virus free.
I wish I had done it BEFORE I was already at stage 3 liver damage and saved myself every bit of my liver I could but unfortunately I didn't know I had it.
If you can beat it NOW you will save yourself so much in the future.
And if you think about it - is there ever going to be a time you WONT be hassled by brain fog? No. After school comes work and kids and all sort of other issues. At least even IF you do have a problem with it (and don't worry it's NOT a permanent type thing in almost every case) it will be over in the future and you won't ever have to worry about it again :)
That's the good news.
Hang in there and breathe. Your feelings have been experienced by just about every person in here.
Good luck.
You just have to jump, get over it and then get on with treatment. In time this will happen. You can't guarantee what will or will not happen. Can't guarantee if you will get 'brain fog' or not really.
You just have to take it easy and take it one day at a time. Most of this treatment is one big giant waiting game.........we're always waiting on something - whether it be your first PCR test results or your final after treatment SVR results.....waiting and worrying is very common.
All I can tell you from my own experience and pains and fog and discomforts is that I treated for 72 weeks. Had good days/times and bad days/times. Rest is important. Knowing as much as you can find out about HOW To manage the side effects (proactively and after the fact) is the BEST thing you can do to help yourself.
But it works. Almost two years later and I'm still virus free.
I wish I had done it BEFORE I was already at stage 3 liver damage and saved myself every bit of my liver I could but unfortunately I didn't know I had it.
If you can beat it NOW you will save yourself so much in the future.
And if you think about it - is there ever going to be a time you WONT be hassled by brain fog? No. After school comes work and kids and all sort of other issues. At least even IF you do have a problem with it (and don't worry it's NOT a permanent type thing in almost every case) it will be over in the future and you won't ever have to worry about it again :)
That's the good news.
Hang in there and breathe. Your feelings have been experienced by just about every person in here.
Good luck.
Thanx.... That was a succinct and helpful comment. I think it's just what I (and probably others) needed to hear :)
Hi MelonL,
I'm glad you're here and I hope you feel a bit better, now that you've tossed around your very serious concerns and heard a variety of views.
It was chilly in the north this time last year when I was there for a month. I was in the south for most of the time and climbed to the top of Eze in my sandals, without skipping a beat. I have a photo on my bedstand of me making it to the top. Now, though, it's tough to make it up my stairs sometimes, so I hope you don't have a five storey walkup!
Must 'run' now and welcome. It's been a long day for you, so good night, your time.
I'm glad you're here and I hope you feel a bit better, now that you've tossed around your very serious concerns and heard a variety of views.
It was chilly in the north this time last year when I was there for a month. I was in the south for most of the time and climbed to the top of Eze in my sandals, without skipping a beat. I have a photo on my bedstand of me making it to the top. Now, though, it's tough to make it up my stairs sometimes, so I hope you don't have a five storey walkup!
Must 'run' now and welcome. It's been a long day for you, so good night, your time.
I recently got the news that I am SVR after being in a Telaprevir trial. Have you had a biopsy? What stage is your liver?
I was only a Stage 2. I treated once with standard treatment and was a non-resonder. During this trial I cleared early and stayed clear. I can honestly say that I have not only recovered from treatment, but, I feel better than I have felt in 30 years! In my opinion, if you have any liver damage and you were planning to treat at some point, would jump at the chance to be in this trial. I doubt there will be another treatment that is "less invasive" coming in my lifetime.
Also, don't you have to be clear at a fairly early point in the trial to continue?
Again, this is just MY opinion, but I would thank God I got into the Telaprevir trial.
On the other hand, if I had a biopsy that showed 0 liver damage...or maybe even Stage 1, that might be a different story. I don't know. But, I'd hate to see you squander this opportunity.
Denise
I was only a Stage 2. I treated once with standard treatment and was a non-resonder. During this trial I cleared early and stayed clear. I can honestly say that I have not only recovered from treatment, but, I feel better than I have felt in 30 years! In my opinion, if you have any liver damage and you were planning to treat at some point, would jump at the chance to be in this trial. I doubt there will be another treatment that is "less invasive" coming in my lifetime.
Also, don't you have to be clear at a fairly early point in the trial to continue?
Again, this is just MY opinion, but I would thank God I got into the Telaprevir trial.
On the other hand, if I had a biopsy that showed 0 liver damage...or maybe even Stage 1, that might be a different story. I don't know. But, I'd hate to see you squander this opportunity.
Denise
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