My doctor also insists that my riba reduction to 600 mg will have no impact on SVR. She said this is supported by several studies. I can only find this one online: http://www.natap.org/2011/EASL/EASL_41.htm
And that study is about the effects of anemia on SVR, so it is not on point.
Sorry, but I wish people would start challenging their docs on this. "Show me the proof." This is important stuff, too important to simply accept whatever the doc says when there is proof to the contrary.
Think about it. How could the docs really know this? The only relevant data available comes from the clinical trials, which means it comes from the drug manufacturer who conducted the clinical trials. The drug manufacturer has admitted that riba reductions do effect SVR at the FDA approval hearings. Read for yourself.
Sunrise747 said
Mar 29, 2012
My doctor also insists that my riba reduction to 600 mg will have no impact on SVR. She said this is supported by several studies. I can only find this one online: http://www.natap.org/2011/EASL/EASL_41.htm
innerview said
Mar 28, 2012
Aloha Meghan! I would love to visit Hawaii some day.
Yeah, the dizziness, lightheadedness, and heart pounding are all familiar. I'm a hiker by nature, and now, like you said, 5 min. and I have to rest. It's going to feel great when we get our mojo back!!!
innerview said
Mar 28, 2012
Thanks Sunrise! good point.
LanaiSurferGirl said
Mar 28, 2012
don't worry! You will be ok later even with the dose reduction. I have been through it too...hit me about week 7. I got cold easily too....I live in Hawaii and it will be 80 degrees outside and I would be wearing a jacket!! hahaha. I also felt very dizzy and ightheaded. I had to wait a few seconds when getting up off the couch and had to take breaks when walking places. I couldn't even walk for 5 minutes without my heart pouding and feeling like it was going to bust out of my chest. I also had a throbing headache all of the time and could hear the throbing in my ears.
Procrit treated me well but took about a month to really kick in and bring my hemoglobin back up. Good luck and be patient with it! Your dose reduction will be helpful in bringing it back up. :)
aloha,
Meghan
news said
Mar 27, 2012
I have three indicators I watch carefully. First is obviously the feeling cold when everyone else is warm. Being a little chilly does not count. Wearing a snowboarding jacket in the house all day does. Second is the pale color of my skin, particuarly the arms and face. And third is how winded I get going up the steps at my office on the way to lunch. When my hematocrit was at 26.4 I could barely carry on a conversation after climbing those stairs.
Then there is the whole gym thing. I go in for a cycling and weight machine workout a few times a week, and each station is automatically logged into a program called FitLixx so I can see if I start to fall off at all. Combine all this with bi-weekly labs and I feel OK being subversive.
Alan
innerview said
Mar 27, 2012
Hey Alan! Congrats on getting your dose up a bit. It just feels like you get the full bang for your buck, if you know what I mean...
I thought I knew what low hgb felt like also... I even told the nurse yesterday, when she was drawing the blood, I'm feeling better and can take more walks now, so I think my RBC is going up.But sadly, no! So it must be that I'm just getting used to what it feels like or something. But I am also experiencing being much colder in my body this week. I am sitting in my house on a sunny day with a coat on... and I'm still cold. Perhaps that is another marker of low hgb. Along with looking more pale.
Sunrise747 said
Mar 27, 2012
Ultimately we all have to make our own decisions about our health, medical care and treatment. It's our lives. The doctors, the many Internet resources, friends and family are all there to help us make the best choices possible. That said, I always think long and hard before ignoring the advice of my doctor. But occasionally I do. One need only look at the vastly different direction the participants on this forum receive for the same issues to see there is seldom one right answer or that the medical profession is in agreement on the correct course of action in any given situation.
news said
Mar 27, 2012
I am hearing pretty much the same thing from my doctor, who is very well respected in this area (Mid-Atlatic USA), and I argued with him until he raised the dose to 800mg/day, after a few weeks at 600. Like you, I sneak in an extra 200mg pill each day to get it up to 1000. I figure I'll meet him in the middle. I get CBC's every two weeks, and I have learned what low hgb feels like, and I have procrit if I need it (not using it for the past six weeks). But this is a poor example of good patient behavior and I would never recommend this sort of foolishness for anyone.
Alan
innerview said
Mar 27, 2012
My hemoglobin dropped another 5 points this week, down to 93. I am starting week 9 today. The top Dr in all of Sweden called me to discuss my concerns about lowering the dose. He said with the new drugs (Incivo/telaprevir) the reduction of Riba is not an issue in SVR for rapid responders. He seemed very clear that the new thought and new paradigm in regards to riba dosing in triple therapy is changing and lower doses will not present a problem.
So I guess I have to trust what he says. But I still may sneak an extra pill a couple of times a week... maybe... although I am not advising anyone to do that.
And that study is about the effects of anemia on SVR, so it is not on point.
Sorry, but I wish people would start challenging their docs on this. "Show me the proof." This is important stuff, too important to simply accept whatever the doc says when there is proof to the contrary.
Think about it. How could the docs really know this? The only relevant data available comes from the clinical trials, which means it comes from the drug manufacturer who conducted the clinical trials. The drug manufacturer has admitted that riba reductions do effect SVR at the FDA approval hearings. Read for yourself.
My doctor also insists that my riba reduction to 600 mg will have no impact on SVR. She said this is supported by several studies. I can only find this one online: http://www.natap.org/2011/EASL/EASL_41.htm
Aloha Meghan! I would love to visit Hawaii some day.
Yeah, the dizziness, lightheadedness, and heart pounding are all familiar. I'm a hiker by nature, and now, like you said, 5 min. and I have to rest. It's going to feel great when we get our mojo back!!!
Thanks Sunrise! good point.
don't worry! You will be ok later even with the dose reduction. I have been through it too...hit me about week 7. I got cold easily too....I live in Hawaii and it will be 80 degrees outside and I would be wearing a jacket!! hahaha. I also felt very dizzy and ightheaded. I had to wait a few seconds when getting up off the couch and had to take breaks when walking places. I couldn't even walk for 5 minutes without my heart pouding and feeling like it was going to bust out of my chest. I also had a throbing headache all of the time and could hear the throbing in my ears.
Procrit treated me well but took about a month to really kick in and bring my hemoglobin back up. Good luck and be patient with it! Your dose reduction will be helpful in bringing it back up. :)
aloha,
Meghan
I have three indicators I watch carefully. First is obviously the feeling cold when everyone else is warm. Being a little chilly does not count. Wearing a snowboarding jacket in the house all day does. Second is the pale color of my skin, particuarly the arms and face. And third is how winded I get going up the steps at my office on the way to lunch. When my hematocrit was at 26.4 I could barely carry on a conversation after climbing those stairs.
Then there is the whole gym thing. I go in for a cycling and weight machine workout a few times a week, and each station is automatically logged into a program called FitLixx so I can see if I start to fall off at all. Combine all this with bi-weekly labs and I feel OK being subversive.
Alan
Hey Alan! Congrats on getting your dose up a bit. It just feels like you get the full bang for your buck, if you know what I mean...
and I'm still cold. Perhaps that is another marker of low hgb. Along with looking more pale.
I thought I knew what low hgb felt like also... I even told the nurse yesterday, when she was drawing the blood, I'm feeling better and can take more walks now, so I think my RBC is going up.But sadly, no! So it must be that I'm just getting used to what it feels like or something. But I am also experiencing being much colder in my body this week. I am sitting in my house on a sunny day with a coat on...
Ultimately we all have to make our own decisions about our health, medical care and treatment. It's our lives. The doctors, the many Internet resources, friends and family are all there to help us make the best choices possible. That said, I always think long and hard before ignoring the advice of my doctor. But occasionally I do. One need only look at the vastly different direction the participants on this forum receive for the same issues to see there is seldom one right answer or that the medical profession is in agreement on the correct course of action in any given situation.
I am hearing pretty much the same thing from my doctor, who is very well respected in this area (Mid-Atlatic USA), and I argued with him until he raised the dose to 800mg/day, after a few weeks at 600. Like you, I sneak in an extra 200mg pill each day to get it up to 1000. I figure I'll meet him in the middle. I get CBC's every two weeks, and I have learned what low hgb feels like, and I have procrit if I need it (not using it for the past six weeks). But this is a poor example of good patient behavior and I would never recommend this sort of foolishness for anyone.
Alan
My hemoglobin dropped another 5 points this week, down to 93. I am starting week 9 today. The top Dr in all of Sweden called me to discuss my concerns about lowering the dose. He said with the new drugs (Incivo/telaprevir) the reduction of Riba is not an issue in SVR for rapid responders. He seemed very clear that the new thought and new paradigm in regards to riba dosing in triple therapy is changing and lower doses will not present a problem.
So I guess I have to trust what he says. But I still may sneak an extra pill a couple of times a week... maybe...
although I am not advising anyone to do that.