Aa
About to start triple therapy with victrelis. any advice?
I'm 28 was diagnosed at 18. Tried SOC for I think 9 months and my mothers insurance dropped me because I turned 19. My doctors cant find any viral load labs after i started .. So any who.. My viral load is 1.5 mil and log pcr is 6.18. I'm starting as soon as I get my meds and can get into an education class. I'm excited and scared at the same time. When I did the tx before I was only 18. The only things i really remember are being tired my hair thinned and i was super depressed. Maybe a few times I was nauseous and vomitted. I was in high school yet then and also worked at a store. Now I have a 5 year old live on my own and work 36 hours a week but I do twelve hour shifts. I worry about how it will effect my ability to function at work but I'm just going to try to stay motivated and push through. I need my health insurance! haha. But I'm also thinking about going into hiding for however long it takes. I dont want to tell anyone else about it and I think they'll know i'm sick if they see me on tx. The people i want to know pretty much all know and are supportive. I'm ready to get this show on the damn road! Any advice? And also does anyone know if my levels are high? I tried looking it up but the terms doctors use are a little harder for me to understand. THANKS and i'm super greatful for finding this site I feel like it really motivated me to get tx stop being in denial and accept myself with this virus.
Oh yea last biopsy I had was about 4 years ago and it showed mild damage and mild inflammation. I got a bunch of labs drawn bmp cbc lfp ptinr all those things and everything was normal. My doctor seems to feel its best to not wait for newer tx and start now.
Oh yea last biopsy I had was about 4 years ago and it showed mild damage and mild inflammation. I got a bunch of labs drawn bmp cbc lfp ptinr all those things and everything was normal. My doctor seems to feel its best to not wait for newer tx and start now.
Sounds like your doctor wasn't very clear about the 4 week lead in, not sure how long you have been on it but you need to get ahold of him... But not doing the lead in should not be a treatment stopper........ Good luck
I was misguided by the pharmacy who delivered my victrelis and the other two meds. They said to start the Victrelis with the injection and the other pills, which I did. Now I am worried about if treatment is going to work for me. They said that if I stop the Victrelis I won't be able tp take it again. I've also been super sick every day.
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http://www.merck-cares.com/cares/merck-cares/hcp/index.jsp#
The ACT Program
At Merck, we understand that obtaining the medicines you need can be complicated by health care reimbursement. To make the process easier, we created The ACT Program. The ACT Program provides free reimbursement support services to help answer questions related to insurance coverage and reimbursement. The ACT Program also refers patients to patient assistance programs, which provide certain medicines free of charge to eligible individuals, primarily the uninsured, who without our assistance, could not afford needed Merck medicines. If you do not meet the prescription drug coverage criteria, your income meets the program criteria, and there are special circumstances of financial and medical hardship that apply to your situation, you can request that an exception be made for you.
This web site will help you understand the program material. If you have any questions, The ACT Program Specialists are available 8AM to 8PM ET, Monday through Friday at 866-363-6379.
http://www.merck.com/merckhelps/act-program/
http://www.merck-cares.com/cares/merck-cares/consumer/coupon-for-pegintron.jsp
http://www.merck-cares.com/cares/merck-cares/hcp/index.jsp#
The ACT Program
At Merck, we understand that obtaining the medicines you need can be complicated by health care reimbursement. To make the process easier, we created The ACT Program. The ACT Program provides free reimbursement support services to help answer questions related to insurance coverage and reimbursement. The ACT Program also refers patients to patient assistance programs, which provide certain medicines free of charge to eligible individuals, primarily the uninsured, who without our assistance, could not afford needed Merck medicines. If you do not meet the prescription drug coverage criteria, your income meets the program criteria, and there are special circumstances of financial and medical hardship that apply to your situation, you can request that an exception be made for you.
This web site will help you understand the program material. If you have any questions, The ACT Program Specialists are available 8AM to 8PM ET, Monday through Friday at 866-363-6379.
http://www.merck.com/merckhelps/act-program/
The pharmacy just called and told me for just peg n rib my copayment is 1300 a month. That's more than half of what I make a month :-(. I'm going to try to get assistance. If not I can't do it.
Looks like I will probably be doing 48 weeks due to hemochromatosis. But that is ok I only want to do this once!
You will do just fine. You have plenty of support and compassion on this forum.
Jules
You will do just fine. You have plenty of support and compassion on this forum.
Jules
Best of luck with your starting of tx with Vic. I am in week 16 and have minimal sx compared to some so I am thankful for that. My biggest issue was when I started the Vic. I spent the first couple of days in the bathroom and it wasn't pretty. Until I started taking Metamucil. I would drink a glass in the evening with my 10pm meds and a glass at 6am meds. Made all the difference in the world. The fiber was extremely helpful and the bowel movements were no longer painful. People have mentioned the "shards of glass" on this forum several times and believe me you don't want to experience it either.
Also have your Dr on the sidelines for rescue drugs...Procrit and Neupogen. I am fortunate I haven't become anemic yet but did experience some Neutropenia. I've only taken one shot so far and it really kicked my ANC levels back to where I started tx.
I've tried to keep walking 4 miles a day but recently I have been down to about 3. If I don't do it first thing in the morning then it doesn't get done. So I try and keep on a schedule as best as I can.
Also there have been days where I went from the bed to the couch. And also run into a few walls a long the way. Just do the best you can you will know what your body can handle. Drink a lot of water and try and exercise. It will help you tremendously!
Best of luck!
Jules
Also have your Dr on the sidelines for rescue drugs...Procrit and Neupogen. I am fortunate I haven't become anemic yet but did experience some Neutropenia. I've only taken one shot so far and it really kicked my ANC levels back to where I started tx.
I've tried to keep walking 4 miles a day but recently I have been down to about 3. If I don't do it first thing in the morning then it doesn't get done. So I try and keep on a schedule as best as I can.
Also there have been days where I went from the bed to the couch. And also run into a few walls a long the way. Just do the best you can you will know what your body can handle. Drink a lot of water and try and exercise. It will help you tremendously!
Best of luck!
Jules
To anyone concerned with cost.
..... In some cases you might be able to switch to generic ribavirin.
Some insurance companies insist on it, other doctors may prescribe it anyway, but you might ask and see if it would be an acceptable switch and if it would end up saving you money.
You would run it by your doctor/pharmacist, obviously.
willy
..... In some cases you might be able to switch to generic ribavirin.
Some insurance companies insist on it, other doctors may prescribe it anyway, but you might ask and see if it would be an acceptable switch and if it would end up saving you money.
You would run it by your doctor/pharmacist, obviously.
willy
'Morning,
Just to let you know, my copays were pretty high. I went to the websites for Vic and pegasys and was able to get coupons toward my copays. It ends up taking a phone call to get a program # etc. this saved me about $250. /month.
Cheers,
C
Just to let you know, my copays were pretty high. I went to the websites for Vic and pegasys and was able to get coupons toward my copays. It ends up taking a phone call to get a program # etc. this saved me about $250. /month.
Cheers,
C
Thanks for all the well wishes i'll def keep whoever is interested posted. I'm just waiting on the call from the pharmacy to schedule drop off and find out how much my co pay will be.... I believe i'm going to be like you 1swimmer swim for short periods then rest haha thats ok with me though i just want to get on w my life.
Hey there, I just finished tx with Vic. I worked all thru tx but rested as much as possible when home. I did manage to swim, but generally for a short time.
I was anxious to get started, as well. Good luck to you!
C
I was anxious to get started, as well. Good luck to you!
C
"What are the chances of someone developing chronic HCV infection, chronic liver disease, cirrhosis, or liver cancer or dying as a result of Hepatitis C?
Of every 100 persons infected with HCV, approximately
75–85 will go on to develop chronic infection
60–70 will go on to develop chronic liver disease
5–20 will go on to develop cirrhosis over a period of 20–30 years
1–5 will die from the consequences of chronic infection (liver cancer or cirrhosis)"
------------------------------------------
Those CDC figures are exactly the figures that experts are now saying are grossly underestimated.
The CDC was basing those figures on the people who had already been diagnosed with Hep C. Most people do not even know they have Hep C and have not been diagnosed yet, so those CDC figures are outdated. Now the Baby Boomers are aging and they are presenting with not only liver problems, but also with extrahepatic manifestations of Hep C as well.
The CDC is way behind the experts. In a few years they will update their stats. Look how long it took them to recommend testing Baby Boomers even though they knew years and years ago that people were developing cirrhosis and dying right and left. They knew people should be tested. It just took them years to get around to recommending it.
Of every 100 persons infected with HCV, approximately
75–85 will go on to develop chronic infection
60–70 will go on to develop chronic liver disease
5–20 will go on to develop cirrhosis over a period of 20–30 years
1–5 will die from the consequences of chronic infection (liver cancer or cirrhosis)"
------------------------------------------
Those CDC figures are exactly the figures that experts are now saying are grossly underestimated.
The CDC was basing those figures on the people who had already been diagnosed with Hep C. Most people do not even know they have Hep C and have not been diagnosed yet, so those CDC figures are outdated. Now the Baby Boomers are aging and they are presenting with not only liver problems, but also with extrahepatic manifestations of Hep C as well.
The CDC is way behind the experts. In a few years they will update their stats. Look how long it took them to recommend testing Baby Boomers even though they knew years and years ago that people were developing cirrhosis and dying right and left. They knew people should be tested. It just took them years to get around to recommending it.
Willy made good points. With rambkeon, because of his experience and the experiences some others , I agree that interferion can, repeat, can be dangerous. However, overall I agree that if she is ready to go, then she should do it. It is a matter of choice. I am happy that the amazing depth and breadth of knowledge that you pooh and will have keeps us in check. I mean that. :). I do like the dialogue, it helps us consider differrnt views or options.
Rivll rambleon on made good points??? He has no clue what he talking about...... Read poohs response to him...
"I would check and see if the drug regimen you are contemplating is even approved by the FDA."
You mean you so far out of the loop you don't even know that? Yet advise people?... I find it odd you just happen to show up here.
You mean you so far out of the loop you don't even know that? Yet advise people?... I find it odd you just happen to show up here.
About to start triple therapy with victrelis. any advice?
--------------------------------------------
Yes...it is an excellent time to treat with the advent of the Protease inhibitors being added to the modality
success rates are now approx..70 -80%
Good luck and congrats on getting started...
Will
I don't want to get into a back and forth, but at least as to this one:
"take comfort in the fact that the vast majority of people with Hep C will die with it, not of it."
I must respond.
"What are the chances of someone developing chronic HCV infection, chronic liver disease, cirrhosis, or liver cancer or dying as a result of Hepatitis C?
Of every 100 persons infected with HCV, approximately
75–85 will go on to develop chronic infection
60–70 will go on to develop chronic liver disease
5–20 will go on to develop cirrhosis over a period of 20–30 years
1–5 will die from the consequences of chronic infection (liver cancer or cirrhosis)"
http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm
Those with chronic infection and chronic disease are overwhelmingly asymptomatic. Even cirrhotics are asymptomatic - I know because I am one, following IFN-ribavirin treatment.
While a Hep C diagnosis is serious and one should pay attention and consider treatment, there is a tremendous amount of unmerited fear generated around this disease. It is the American way of doing business. Somebody has a product, so somebody has to make a need.
"take comfort in the fact that the vast majority of people with Hep C will die with it, not of it."
I must respond.
"What are the chances of someone developing chronic HCV infection, chronic liver disease, cirrhosis, or liver cancer or dying as a result of Hepatitis C?
Of every 100 persons infected with HCV, approximately
75–85 will go on to develop chronic infection
60–70 will go on to develop chronic liver disease
5–20 will go on to develop cirrhosis over a period of 20–30 years
1–5 will die from the consequences of chronic infection (liver cancer or cirrhosis)"
http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm
Those with chronic infection and chronic disease are overwhelmingly asymptomatic. Even cirrhotics are asymptomatic - I know because I am one, following IFN-ribavirin treatment.
While a Hep C diagnosis is serious and one should pay attention and consider treatment, there is a tremendous amount of unmerited fear generated around this disease. It is the American way of doing business. Somebody has a product, so somebody has to make a need.
"check and see if the drug regimen you are contemplating is even approved by the FDA. "
-----------------------------------------
The original poster is doing triple with Victrelis. That regimen is not off label. It was approved by the FDA about 16-17 months ago.
"The risk of serious side effects is almost as high as the possibility of interferon saving your life (note I did not say "of interferon clearing the virus" as most with the virus won't have serious problems anyway, and you have to consider the odds - 1 in 20 or so - of you being the one who would have liver cancer or liver failure decades down the road). "
----------------------------------------
Where are you getting these statistics? Please give us the source. The data I read and the presentations I watch do recognize the extrahepatic manifestations of Hep C, some of which are life threatening, and they do recognize that the previous estimates of people who will advance to cirrhosis, ESLD, and/or cancer have been grossly underestimated.
"I'd absolutely wait to treat. Let other treatments come on line and let other people guinea pig the side effects"
---------------------------------------
First, other people have already guinea pigged these triple med treatments.
Second, you say you would absolutely wait. That is fine. That is your decision. But this person wants to treat and wants to get rid of the virus. Why are some people trying to scare the OP into not treating.
"eat very well (lots of green leafy veggies etc - stay away from junk food - read "In Defense of Food" - .... take alcohol only in moderation (or better yet not at all), quit smoking if you do, keep your weight down. These too are ways of treating the disease."
---------------------------------------
These are positive things to do, but they are not going to cure Hep C or prevent the progression of liver fibrosis. And they will not keep anyone from developing extrahepatic manifestations either.
"take comfort in the fact that the vast majority of people with Hep C will die with it, not of it."
-------------------------------------------
Please quote the source for this statement.
Plus, if a person dies of Hepatitis C induced diabetes, and the death cert. says the person died from diabetes, what killed the person. If the person did not have Hep C, the person would not have had diabetes. So, even though that death is not attributed to Hep C, it was Hep C that caused the death. And how about death from Hep C induced Lymphoma. The death cert may say cause was Lymphoma, but if the Hep C caused the Lymphoma, then Hep C caused the death, even if it is not recognized.
None of us knows which of us will continue to progress to ESLD and/or liver cancer. None of us knows which of us will get major extrahepatic manifestations. Not treating is a gamble, but it is a gamble with high stakes.
-----------------------------------------
The original poster is doing triple with Victrelis. That regimen is not off label. It was approved by the FDA about 16-17 months ago.
"The risk of serious side effects is almost as high as the possibility of interferon saving your life (note I did not say "of interferon clearing the virus" as most with the virus won't have serious problems anyway, and you have to consider the odds - 1 in 20 or so - of you being the one who would have liver cancer or liver failure decades down the road). "
----------------------------------------
Where are you getting these statistics? Please give us the source. The data I read and the presentations I watch do recognize the extrahepatic manifestations of Hep C, some of which are life threatening, and they do recognize that the previous estimates of people who will advance to cirrhosis, ESLD, and/or cancer have been grossly underestimated.
"I'd absolutely wait to treat. Let other treatments come on line and let other people guinea pig the side effects"
---------------------------------------
First, other people have already guinea pigged these triple med treatments.
Second, you say you would absolutely wait. That is fine. That is your decision. But this person wants to treat and wants to get rid of the virus. Why are some people trying to scare the OP into not treating.
"eat very well (lots of green leafy veggies etc - stay away from junk food - read "In Defense of Food" - .... take alcohol only in moderation (or better yet not at all), quit smoking if you do, keep your weight down. These too are ways of treating the disease."
---------------------------------------
These are positive things to do, but they are not going to cure Hep C or prevent the progression of liver fibrosis. And they will not keep anyone from developing extrahepatic manifestations either.
"take comfort in the fact that the vast majority of people with Hep C will die with it, not of it."
-------------------------------------------
Please quote the source for this statement.
Plus, if a person dies of Hepatitis C induced diabetes, and the death cert. says the person died from diabetes, what killed the person. If the person did not have Hep C, the person would not have had diabetes. So, even though that death is not attributed to Hep C, it was Hep C that caused the death. And how about death from Hep C induced Lymphoma. The death cert may say cause was Lymphoma, but if the Hep C caused the Lymphoma, then Hep C caused the death, even if it is not recognized.
None of us knows which of us will continue to progress to ESLD and/or liver cancer. None of us knows which of us will get major extrahepatic manifestations. Not treating is a gamble, but it is a gamble with high stakes.
As others said, it is a personal choice to treat or not. I totally respect your decision even though you probaly could wait to treat. When I was diagnosed, I just wanted the virus gone. I did my research, I knew the risks, I also knew there were safer drugs due to come out. I wanted it gone, I wanted to treat, I was actually excited to treat, scared yes, but excited. I am glad you are standing by your decision, you clearly have an agenda, did your research and have an experienced Dr. by your side. Good luck.
Don't fret libnic84, you're doing the right thing for you.
It's kind of like a swim hole around here. Some jump in, bold and ready to go, they may struggle but they get to the other side and raise their arms in triumph. Others may stick their toe in the water and decide it's not for them, they want the least path of resistance. And then you have those jump in and sink to the bottom and in many cases they will always blame the water for their demise.
Stay strong, you'll make it!
It's kind of like a swim hole around here. Some jump in, bold and ready to go, they may struggle but they get to the other side and raise their arms in triumph. Others may stick their toe in the water and decide it's not for them, they want the least path of resistance. And then you have those jump in and sink to the bottom and in many cases they will always blame the water for their demise.
Stay strong, you'll make it!
Good luck to you. You are young and healthy and either way you should come through this okay.
Make sure you get a lot of support for your son and if you do have problems, keep your Dr. in the loop. A good doc can make a big difference.
I think Willy and Rambleon bring out important points for people when faced with making an informed choice,
However you have made your choice and you have a good attitude. I say more power to you.
Make sure you get a lot of support for your son and if you do have problems, keep your Dr. in the loop. A good doc can make a big difference.
I think Willy and Rambleon bring out important points for people when faced with making an informed choice,
However you have made your choice and you have a good attitude. I say more power to you.
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