Your symptom list matchs up with me perfect, same thing I am at week 17 now out of 48. Dropping Incevik was good and all my 12 wk labs are und. I am 59.
Just went on a trip to Hawaii to visit a Son stationed there and his older brother came out, what a drag to be in Hawaii and barely make it from a swim back to the car without acting and panting like I had just ran a 10k or something.
My Boys knew what I was was going through and were very understanding.
48 weeks, hell, call it a year. I guess it does beat the alternative.
Fajah
iggle said
Sep 29, 2012
Malcolm - Incivek is a pain in the ass litterally, but I would definitely prefer the 12 weeks to 44. The large amount of pills and alarm clocks is definitely a major thing. One of the best things about finishing incivek was no more alarm clocks! Hang in there, you're one of the captains around here.
JoAnneh - I have a lot of the same side effects as you. I often feel out of breath just taking a short walk, I am paler than ever, I've had a lot of dizzy spells, my hair is falling out, and my brain is pretty foggy. I will say that for me the past 3 weeks or so I can tell that my anemia is slowly improving. Hopefully yours will improve as well. Finishing incivek was tremendous for me too, and things overall have been so much better since then.
Just 1 of these meds alone has enough bad side effects for us to deal with, but combining three of them at once is an ass kicker. I consider myself a fairly tough guy, but this tx has almost made me crack a few times.
Shep said
Sep 28, 2012
Hey Malcolm--you are truly a trail blazer and completely amazing. You are a true treasure---29 weeks is truly something and I will be cheering for you the whole rest of the way!
JoAnneh said
Sep 27, 2012
I am on Triple tx w Invicek. Yes we improve greatly after Invicek. Invicek causes rectal issues, sores on tongue and painful rash. I finished Invicek 2 months ago. And sx improved greatly but Now after 2 months I am having dizzy spells and extreme anemic. I can't do much walking before I am out of breath! My hair is coming out and I have 48 weeks total! I am pale pale pale and have gained 14 lbs. eating is only Thing that helps the dizziness. I am 53 and always had an active life. My memory is foggy. Maybe extra sleep will help! I can't imagine 18 pills a day!!!! I am relieved that after Invicek finished, I only have RIBA twice daily. Michaele, Did u google interferon to find info on it Or do u have site I could read? No matter what I still have 23 weeks after Friday!:) So glad for formun and sorry for whining too much As one suggested..... Liver transplant or medicine! No brainer! Love to all, JoAnne
krowdog said
Sep 27, 2012
mallani wrote:
Every day is different, and boredom is just a state of mind...
Yep, just a state of mind...and soon a memory.
Your steps forward just HAVE to be a little easier, when you can look back on Und's at weeks 8, 12, 16, and 24. You, of all people, know how huge THAT is. It would seem that each additional week you go just adds a little more insurance. That's a good place to be.
See you soon in the SVR club!
Brad
Phil G said
Sep 27, 2012
Hang in there Malcolm. At 29 weeks, I think you are definitely blazing a new trail.
mallani said
Sep 27, 2012
Hi Michaele, I'm OK. Every day is different, and boredom is just a state of mind. It's a struggle, but I don't have the option of going on a transplant list, so this is it. Cheers.
Michaele said
Sep 26, 2012
Hi Mallani, all your info has been a blessing. We are similar in age and stage, but Im not a man. So I'll use the sex card to say Im so afraid of this Tx. I know we discussed some of the pros and cons of this and ,yeah do it or end up on a donor list. I can deal with side effects but the interferon is the scarriest thing Ive read and I just cant get the cardiac complications out of my head. I'll be living alone , and may live 6 mins from ED but what good is that if my heart gives out and Im alone? Im going to talk to the Dr about this as soon as they call me to come in. My Dr is a GI, do I really need to change to a hepatologist? She is the Dr I was referred to when I asked to be referred to one. I do trust her, but........... Anyhow, how are you doing? From what you said it doesnt get easier, has it gotten worse for you, beside the boredom? I am cheering for you and your lady. Michaele
mallani said
Sep 26, 2012
Hi Murat, if you look up the Prescribing Information at the Victrelis website, you will see that the 48 week duration (with 44 weeks Vict.), is standard for cirrhosis. My doc. attended a Meeting in the USA two months ago, and it was thought that even F3's should be treated for 36 or 48 weeks. As liver fibrosis progresses, liver perfusion drops. It is thought this is why the F3's, F3-4's and F4's have progressively lower SVR rates. It's all about delivery of the drugs to hepatocytes via the hepatic artery and portal vein.
As I said in another post, worrying about SVR rates is not productive. I am happy to have the chance of cure, but just wanted patients to consider all the options, if they need long duration Rx. Cheers- thanks for the interest.
cmerduran said
Sep 26, 2012
Hi Mallani,
Can you explain it with more detail? Did your doctor prefer you to use victrelis for 48week instead standart 36week? Is there any study about advantages of streching victrelis usage to 48 weeks?
mallani said
Sep 26, 2012
From looking at previous posts, I appear to be the first to be doing 48 weeks of Victrelis triple (i.e. 44 weeks of Vict.). There are some others following so I'll blaze the trail. For those unlucky enough to be doing 48 weeks, I make the following suggestion.
As you are F4 (possibly F3-4), the Sx will be significantly worse. SVR rates for Victrelis and Incivek are similar. From reading posts, for Incivek patients, Sx improve after the Inciv. is finished ( i.e. after 12 weeks). The Sx of the Victrelis triple continue for the full duration and may actually worsen. The heavy pill burden of Vict. is also a factor. Sorting out the 18 caps/day into various containers becomes a headache producing chore, and the alarm clocks for the 4times/day pill taking continue for 44 weeks. These seem minor things, but patients get increasingly wornout by Rx.
Victrelis is still a relatively new drug, and the long term effects have only been studied for a few years. Incivek is similar. I would prefer to take the lowest possible dose.
If you have a choice, I would pick Incivek every time for long-term Rx. (my opinion only).
-- Edited by mallani on Wednesday 26th of September 2012 11:08:36 AM
JoAnneh,
Your symptom list matchs up with me perfect, same thing I am at week 17 now out of 48. Dropping Incevik was good and all my 12 wk labs are und. I am 59.
Just went on a trip to Hawaii to visit a Son stationed there and his older brother came out, what a drag to be in Hawaii and barely make it from a swim back to the car without acting and panting like I had just ran a 10k or something.
My Boys knew what I was was going through and were very understanding.
48 weeks, hell, call it a year. I guess it does beat the alternative.
Fajah
Malcolm - Incivek is a pain in the ass litterally, but I would definitely prefer the 12 weeks to 44. The large amount of pills and alarm clocks is definitely a major thing. One of the best things about finishing incivek was no more alarm clocks! Hang in there, you're one of the captains around here.
JoAnneh - I have a lot of the same side effects as you. I often feel out of breath just taking a short walk, I am paler than ever, I've had a lot of dizzy spells, my hair is falling out, and my brain is pretty foggy. I will say that for me the past 3 weeks or so I can tell that my anemia is slowly improving. Hopefully yours will improve as well. Finishing incivek was tremendous for me too, and things overall have been so much better since then.
Just 1 of these meds alone has enough bad side effects for us to deal with, but combining three of them at once is an ass kicker. I consider myself a fairly tough guy, but this tx has almost made me crack a few times.
Now after 2 months I am having dizzy spells and extreme anemic.
I can't do much walking before I am out of breath!
My hair is coming out and I have 48 weeks total!
I am pale pale pale and have gained 14 lbs. eating is only
Thing that helps the dizziness. I am 53 and always had an active life.
My memory is foggy. Maybe extra sleep will help!
I can't imagine 18 pills a day!!!! I am relieved that after Invicek finished,
I only have RIBA twice daily.
Michaele, Did u google interferon to find info on it
Or do u have site I could read?
No matter what I still have 23 weeks after Friday!:)
So glad for formun and sorry for whining too much
As one suggested..... Liver transplant or medicine!
No brainer! Love to all, JoAnne
Yep, just a state of mind...and soon a memory.
Your steps forward just HAVE to be a little easier, when you can look back on Und's at weeks 8, 12, 16, and 24. You, of all people, know how huge THAT is. It would seem that each additional week you go just adds a little more insurance. That's a good place to be.
See you soon in the SVR club!
Brad
Hang in there Malcolm. At 29 weeks, I think you are definitely blazing a new trail.
Hi Michaele, I'm OK. Every day is different, and boredom is just a state of mind. It's a struggle, but I don't have the option of going on a transplant list, so this is it. Cheers.
Hi Mallani, all your info has been a blessing. We are similar in age and stage, but Im not a man. So I'll use the sex card to say Im so afraid of this Tx. I know we discussed some of the pros and cons of this and ,yeah do it or end up on a donor list. I can deal with side effects but the interferon is the scarriest thing Ive read and I just cant get the cardiac complications out of my head. I'll be living alone , and may live 6 mins from ED but what good is that if my heart gives out and Im alone? Im going to talk to the Dr about this as soon as they call me to come in. My Dr is a GI, do I really need to change to a hepatologist? She is the Dr I was referred to when I asked to be referred to one. I do trust her, but........... Anyhow, how are you doing? From what you said it doesnt get easier, has it gotten worse for you, beside the boredom? I am cheering for you and your lady. Michaele
Hi Murat, if you look up the Prescribing Information at the Victrelis website, you will see that the 48 week duration (with 44 weeks Vict.), is standard for cirrhosis. My doc. attended a Meeting in the USA two months ago, and it was thought that even F3's should be treated for 36 or 48 weeks. As liver fibrosis progresses, liver perfusion drops. It is thought this is why the F3's, F3-4's and F4's have progressively lower SVR rates. It's all about delivery of the drugs to hepatocytes via the hepatic artery and portal vein.
As I said in another post, worrying about SVR rates is not productive. I am happy to have the chance of cure, but just wanted patients to consider all the options, if they need long duration Rx. Cheers- thanks for the interest.
Can you explain it with more detail? Did your doctor prefer you to use victrelis for 48week instead standart 36week? Is there any study about advantages of streching victrelis usage to 48 weeks?
From looking at previous posts, I appear to be the first to be doing 48 weeks of Victrelis triple (i.e. 44 weeks of Vict.). There are some others following so I'll blaze the trail. For those unlucky enough to be doing 48 weeks, I make the following suggestion.
As you are F4 (possibly F3-4), the Sx will be significantly worse. SVR rates for Victrelis and Incivek are similar. From reading posts, for Incivek patients, Sx improve after the Inciv. is finished ( i.e. after 12 weeks). The Sx of the Victrelis triple continue for the full duration and may actually worsen. The heavy pill burden of Vict. is also a factor. Sorting out the 18 caps/day into various containers becomes a headache producing chore, and the alarm clocks for the 4times/day pill taking continue for 44 weeks. These seem minor things, but patients get increasingly wornout by Rx.
Victrelis is still a relatively new drug, and the long term effects have only been studied for a few years. Incivek is similar. I would prefer to take the lowest possible dose.
If you have a choice, I would pick Incivek every time for long-term Rx. (my opinion only).
-- Edited by mallani on Wednesday 26th of September 2012 11:08:36 AM