Isiscat brough up a good point (though I don't exactly agree with her numbers.)
The point is this. Our chances of SVR vary with many factors. Previous relapsers, tx naive, cirrhosis, african american, even IL28B genotypes -CC,CT, or TT allele.
The good news is this info is available. Vertex has broken down the response rates for all this. Find out all the catagories you fit, and you can come to a pretty close idea of your chances, if you do the research.
I did this, and was why I decided to treat. I didn't get the allele test, but would have, if I were to do it over.
Brad
(Geno 1a, Incivek triple TX, UND @ 4,8,12,16 weeks. Currently in wk 19)
deny_zoo29 said
Feb 25, 2012
I was constatly cold while on the Incivek, not quite as bad since getting off of it and getting closer to the end of treatment. Oh but the brain fog is getting worse the longer I'm on treatment. Can't wait to be done so I can get my brain back (It reminds me of "pregnancy brain"...the airheadedness in the last trimester of pregnancy!)
Isiscat2011 said
Feb 24, 2012
Caryn wrote:
Wow - that is going to drive me insane. I am very high strung. I cannot sit still for very long at all. I already take klonapin for anxiety and to sleep at night. Maybe she will let me bump that up...Thanks for the feedback. I want to know so much before I jump in to this
There are times in life when we can advise another person that they should do or not do something for their own good and the advice will be 100% correct. For example: "Don't smoke," or "Don't let another person use you as their punching bag." Not much room for error in this type of advice. Whether to tx now or wait for better drugs, however, is not one of those times. All we can do when making this decision is to weigh the possible costs and benefits and ultimately rely on our own instinct and intuition as well as our own knowledge of ourselves and our bodies (since neither the costs or the benefits are certain).
As to possible costs and benefits, it is important to understand that the statistic that we always see-- the "up to 80% SVR" for the incivek based triple therapy--is not the full story. This number represents people who have completed the tx for either 6 months or a year. It does not represent the apx 20% who will be non-responders or the apx 15% (both are conservative estimates) who will be tx intolerant. So, when you really look at the numbers about 35% of people who start tx will be unable to complete it, and another 20% will complete it but not achieve SVR. It is necessary to view this information objectively and in context when trying to make a rational decision, rather than one based on emotion, or what we are wishing will happen.
The potential health costs include side effects, which people have been open about here, some of which are manageable and others that are not. Make no mistake not all side effects can be medicated or talked through. Additional possible costs include post tx health problems caused or exacerbated by this harsh tx.
The possible benefit is primarily that we may achieve SVR, and that is a biggie. But, again, what are the actual odds? To me they look closer to 50/50 (at best) when we factor in the non-responders and tx intolerant results. These odds may be acceptable (or even highly encouraging) to some, but not for others, particularly considering the new drugs in the pipeline. It is such a personal choice and the results are simply too unpredictable to be able to advise another person with any degree of certainty. All I can hope to do is to try to help you make an informed decision and wish you the very best.
news said
Feb 24, 2012
Not only does it vary greatly from person to person, but for me it varied from week to week, for no apparent reason. Most weeks were "good", but a few were "OK", and two were bad. I remember in Week 10 I spent two consecutive days in bed. In my entire life, even before flu shots, I never spent two full days in bed. But this stuff can bring out the "best" in any of us.
Looking back I can remember getting depressed and sometimes wanting to give up. But whatever horrid side effect it was would pass in a day or two, and I would be better. And now that Incivek is finished, I feel pretty good each day. Still tired, get winded easily, and just a touch of itchiness, but certainly a big improvement over the first twelve weeks.
I hope you (Caryn) will go ahead and start treatment and rely on your doctors, friends and this forum to talk you through it.
Alan
kiwi said
Feb 24, 2012
yup everyone is different... i just feel tired as well. they put me on AD before i even started tx, i have a bit of trouble sleeping but im handling it...
dont expect the same as everyone else, coz we all seem to have different reactions. stay positive...
Kellyw said
Feb 24, 2012
I think I don't have too bad of sx, but I get roller coaster stomach sometimes and a little restless leg. TIRED is the best word for mostly how I feel. I work full time though (so far). Everyone is different.
Caryn said
Feb 24, 2012
Wow - that is going to drive me insane. I am very high strung. I cannot sit still for very long at all. I already take klonapin for anxiety and to sleep at night. Maybe she will let me bump that up...Thanks for the feedback. I want to know so much before I jump in to this
cntryboyar said
Feb 24, 2012
I agree Kelly, if i where to sum up tx in one word it would be....tired! I was like you Caryn, couldn't sit still and always active, but since i started tx, being still and just wanting to rest is all i want to do! And it's alright, your body needs extra rest while on tx.
-- Edited by cntryboyar on Friday 24th of February 2012 11:18:47 AM
Anna Christie said
Feb 24, 2012
Hi. It is bad. Made me want to climb the walls. After three months of that MD gave me ativan for it. Takes the edge off some, but I don't take very much Ativan. I think I have an extreme reaction.I have always been very senstive to meds and am high strung. I was very thin start of tx and have lost 20 lbs after that so it just is having a profound effect on me. But if it does it to you, just ask md for something.Ad would probably work just as well except on me they make me feel agitated so I can't take them. I will take what ever I need to to get thru this tx and stop it immediately when I get off tx. Funny thing, I have a friend on TX also and she loves how the ribivarin makes her feel speedy. Anyway ribivarin has a side effect of anxiety. Such fun meds we get to take.
Caryn said
Feb 24, 2012
Hi Anna Chrisite - I was just reading your post. I absolutely HATE the speeding feeling from anything I take. This worries me as I am due to start tx soon. Is it super bad or does it just put you on edge or both?
Anna Christie said
Feb 24, 2012
Yeah that brain fog is getting really bad now for me too. Haven't felt this out of for months. Just seems like my brain and body have had enough of this stuff and have sizzled out. I am like a burnt out case. And the speeeding feeling from the ribivarin is getting overpowering. I just try not to do anything too complicated and not drive too much.Don't want to get into a wreck. I felt pretty good about 3 weeks ago when my hgb went up to 11.9 and thought it would be uphill from there. Not. Hgb is stil 11.8 but body and mind are worn out I guess. But I ponder about happy things to do when I get off this stuff and know that those times are coming in a few weeks. This is just an interlude I am in right now. Just be patient and don't mess anything up is my motto right now. We wil all get to the end eventually and get rid of this beast.
cntryboyar said
Feb 23, 2012
It always is something new everyday, and i'm like you Shep, the brain fog is getting unbearable. I double dosed my riba a few days ago because i couldn't remember if i had taken my afternoon dose at work or not. Got home and tried to focus and remember but i couldn't so i threw down another pill when i got home. Of course as soon as i swallowed it, it hit me, yeah you took it on schedule dummy. Probably just mind playing head games with myself that afternoon but it felt like my heart was racing for about 4 hours till i went to bed that night.......gotta love the brain fog!
Shep said
Feb 23, 2012
Yep I have lovely cracked fingers. As soon as one heals & it takes about 3 weeks. Get another one. Makes squeezing lemons a painful experience.
I have been on synthroid for about 16 years--so they just upped my dose for the next month.
The brain fog is unbearable--this evening instead of taking my Ribavirin --I took the Victrelis which was only 4 hours since the last dose. I am a little worried I may have a reaction. Has anyone else done this??
ordinary said
Feb 23, 2012
Hi Alan,
I have the same thing going on with my hands. My nurse recommended a little A&D ointment mixed with a moisturizer like Cerave (the jar). Then wear cloth gloves overnight--not very manly--but it helps.
ordinary
news said
Feb 22, 2012
I have been feeling cold for weeks, also. I figured it was because of the low red cells and hemaglobin. At my last doctor's appointment the CRNP informed me that my thyroid was a little high, along with the other data, like red cells and VL. She said my normal doctor may need to do something about that. I am hoping Spring will come first.Enough drugs already.
My latest gripe is that the skin on my fingertips and thumbs has split open right at the nails, and tying shoes, pulling up socks, buttoning shirts and pants, etc now requires pain. Always pain. Very tired of pain.
So as our buddy Shep correctly stated, it's something new every day.
Alan
kiwi said
Feb 22, 2012
sure is something new ay.... hope they sort that out for ya... for me, i started tx on 10 nov, and was 'due' for my period on the 18th, well its now nearly 16 weeks later and its never turned up at all.... yaaaay, hope it doesnt come back i will take that bonus....
hope ya start to feel warmer soon. i could send some of this new zealand mugginess over right now....
take it easy,
kiwi
Iris Dragonfly said
Feb 22, 2012
Oh dear Shep...Dragon-yurass.
Will they prescribe synthroid or something? Or have you tried copious seaweed intake? Ummmm, lots of sushi?
Hope you find some relief, are they concerned that this could be a permanent side effect?? Geez dear this sucks.
Kelly, i'm there with you ...burning up!
BB, Iris
Kellyw said
Feb 22, 2012
It sure is! You never know what will hit you next. Big or small. hope they can "reset" your thyroid ? I have opposite. Hot flashes Often. I had them before with the menopause, but now much more often.
Take care
Kelly
Shep said
Feb 22, 2012
Well--today went & had labs done for the BIG test which I will get the results for next week. So in the meantime--just carrying on with my normal crazy work day--with luncheons, teenagers, classes. And of course I am very tired & have been shivering for days. Always cold. My nurse calls about 4 to tell me my thyroid has gone through the roof. I have had thryroid issues for 16 years. It all made sense--that is part of the reason I have been dragging around & so, so cold.
Isiscat brough up a good point (though I don't exactly agree with her numbers.)
The point is this. Our chances of SVR vary with many factors. Previous relapsers, tx naive, cirrhosis, african american, even IL28B genotypes -CC,CT, or TT allele.
The good news is this info is available. Vertex has broken down the response rates for all this. Find out all the catagories you fit, and you can come to a pretty close idea of your chances, if you do the research.
I did this, and was why I decided to treat. I didn't get the allele test, but would have, if I were to do it over.
Brad
(Geno 1a, Incivek triple TX, UND @ 4,8,12,16 weeks. Currently in wk 19)
I was constatly cold while on the Incivek, not quite as bad since getting off of it and getting closer to the end of treatment. Oh but the brain fog is getting worse the longer I'm on treatment. Can't wait to be done so I can get my brain back (It reminds me of "pregnancy brain"...the airheadedness in the last trimester of pregnancy!)
There are times in life when we can advise another person that they should do or not do something for their own good and the advice will be 100% correct. For example: "Don't smoke," or "Don't let another person use you as their punching bag." Not much room for error in this type of advice. Whether to tx now or wait for better drugs, however, is not one of those times. All we can do when making this decision is to weigh the possible costs and benefits and ultimately rely on our own instinct and intuition as well as our own knowledge of ourselves and our bodies (since neither the costs or the benefits are certain).
As to possible costs and benefits, it is important to understand that the statistic that we always see-- the "up to 80% SVR" for the incivek based triple therapy--is not the full story. This number represents people who have completed the tx for either 6 months or a year. It does not represent the apx 20% who will be non-responders or the apx 15% (both are conservative estimates) who will be tx intolerant. So, when you really look at the numbers about 35% of people who start tx will be unable to complete it, and another 20% will complete it but not achieve SVR. It is necessary to view this information objectively and in context when trying to make a rational decision, rather than one based on emotion, or what we are wishing will happen.
The potential health costs include side effects, which people have been open about here, some of which are manageable and others that are not. Make no mistake not all side effects can be medicated or talked through. Additional possible costs include post tx health problems caused or exacerbated by this harsh tx.
The possible benefit is primarily that we may achieve SVR, and that is a biggie. But, again, what are the actual odds? To me they look closer to 50/50 (at best) when we factor in the non-responders and tx intolerant results. These odds may be acceptable (or even highly encouraging) to some, but not for others, particularly considering the new drugs in the pipeline. It is such a personal choice and the results are simply too unpredictable to be able to advise another person with any degree of certainty. All I can hope to do is to try to help you make an informed decision and wish you the very best.
Not only does it vary greatly from person to person, but for me it varied from week to week, for no apparent reason. Most weeks were "good", but a few were "OK", and two were bad. I remember in Week 10 I spent two consecutive days in bed. In my entire life, even before flu shots, I never spent two full days in bed. But this stuff can bring out the "best" in any of us.
Looking back I can remember getting depressed and sometimes wanting to give up. But whatever horrid side effect it was would pass in a day or two, and I would be better. And now that Incivek is finished, I feel pretty good each day. Still tired, get winded easily, and just a touch of itchiness, but certainly a big improvement over the first twelve weeks.
I hope you (Caryn) will go ahead and start treatment and rely on your doctors, friends and this forum to talk you through it.
Alan
yup everyone is different... i just feel tired as well. they put me on AD before i even started tx, i have a bit of trouble sleeping but im handling it...
dont expect the same as everyone else, coz we all seem to have different reactions. stay positive...
Wow - that is going to drive me insane. I am very high strung. I cannot sit still for very long at all. I already take klonapin for anxiety and to sleep at night. Maybe she will let me bump that up...Thanks for the feedback. I want to know so much before I jump in to this
I agree Kelly, if i where to sum up tx in one word it would be....tired! I was like you Caryn, couldn't sit still and always active, but since i started tx, being still and just wanting to rest is all i want to do! And it's alright, your body needs extra rest while on tx.
-- Edited by cntryboyar on Friday 24th of February 2012 11:18:47 AM
Hi. It is bad. Made me want to climb the walls. After three months of that MD gave me ativan for it. Takes the edge off some, but I don't take very much Ativan. I think I have an extreme reaction.I have always been very senstive to meds and am high strung. I was very thin start of tx and have lost 20 lbs after that so it just is having a profound effect on me. But if it does it to you, just ask md for something.Ad would probably work just as well except on me they make me feel agitated so I can't take them. I will take what ever I need to to get thru this tx and stop it immediately when I get off tx. Funny thing, I have a friend on TX also and she loves how the ribivarin makes her feel speedy. Anyway ribivarin has a side effect of anxiety. Such fun meds we get to take.
Hi Anna Chrisite - I was just reading your post. I absolutely HATE the speeding feeling from anything I take. This worries me as I am due to start tx soon. Is it super bad or does it just put you on edge or both?
Yeah that brain fog is getting really bad now for me too. Haven't felt this out of for months. Just seems like my brain and body have had enough of this stuff and have sizzled out. I am like a burnt out case. And the speeeding feeling from the ribivarin is getting overpowering. I just try not to do anything too complicated and not drive too much.Don't want to get into a wreck. I felt pretty good about 3 weeks ago when my hgb went up to 11.9 and thought it would be uphill from there. Not. Hgb is stil 11.8 but body and mind are worn out I guess. But I ponder about happy things to do when I get off this stuff and know that those times are coming in a few weeks. This is just an interlude I am in right now. Just be patient and don't mess anything up is my motto right now. We wil all get to the end eventually and get rid of this beast.
It always is something new everyday, and i'm like you Shep, the brain fog is getting unbearable. I double dosed my riba a few days ago because i couldn't remember if i had taken my afternoon dose at work or not. Got home and tried to focus and remember but i couldn't so i threw down another pill when i got home. Of course as soon as i swallowed it, it hit me, yeah you took it on schedule dummy. Probably just mind playing head games with myself that afternoon but it felt like my heart was racing for about 4 hours till i went to bed that night.......gotta love the brain fog!
Makes squeezing lemons a painful experience.
I have been on synthroid for about 16 years--so they just upped my dose for the next month.
The brain fog is unbearable--this evening instead of taking my Ribavirin --I took the Victrelis which was only 4 hours since the last dose. I am a little worried I may have a reaction. Has anyone else done this??
Hi Alan,
I have the same thing going on with my hands. My nurse recommended a little A&D ointment mixed with a moisturizer like Cerave (the jar). Then wear cloth gloves overnight--not very manly--but it helps.
ordinary
I have been feeling cold for weeks, also. I figured it was because of the low red cells and hemaglobin. At my last doctor's appointment the CRNP informed me that my thyroid was a little high, along with the other data, like red cells and VL. She said my normal doctor may need to do something about that. I am hoping Spring will come first.Enough drugs already.
My latest gripe is that the skin on my fingertips and thumbs has split open right at the nails, and tying shoes, pulling up socks, buttoning shirts and pants, etc now requires pain. Always pain. Very tired of pain.
So as our buddy Shep correctly stated, it's something new every day.
Alan
sure is something new ay.... hope they sort that out for ya... for me, i started tx on 10 nov, and was 'due' for my period on the 18th, well its now nearly 16 weeks later and its never turned up at all.... yaaaay, hope it doesnt come back i will take that bonus....
hope ya start to feel warmer soon. i could send some of this new zealand mugginess over right now....
take it easy,
kiwi
Oh dear Shep...Dragon-yurass.
Will they prescribe synthroid or something? Or have you tried copious seaweed intake? Ummmm, lots of sushi?
Hope you find some relief, are they concerned that this could be a permanent side effect?? Geez dear this sucks.
Kelly, i'm there with you ...burning up!
BB, Iris
Well--today went & had labs done for the BIG test which I will get the results for next week. So in the meantime--just carrying on with my normal crazy work day--with luncheons, teenagers, classes. And of course I am very tired & have been shivering for days. Always cold. My nurse calls about 4 to tell me my thyroid has gone through the roof. I have had thryroid issues for 16 years. It all made sense--that is part of the reason I have been dragging around & so, so cold.
Every day is a new adventure with this tx!
Shep