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Is there an ideal time or liver stage to begin therapy?
When is it recommended to start treatment - I am having a liver biopsy soon and then the doctor wants to start treatment. Everything I read about the side effects scares me to death. I wanted to keep working but if it makes you as sick as I have read, then maybe I would want to start treatment at a later time???? Or do I need to go for the cure no matter the liver stage?
"When is it recommended to start treatment - I am having a liver biopsy soon and then the doctor wants to start treatment. Everything I read about the side effects scares me to death. I wanted to keep working but if it makes you as sick as I have read, then maybe I would want to start treatment at a later time???? Or do I need to go for the cure no matter the liver stage? "
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You have not included much information in your profile or posts. It would help to know the following:
*What is your Genotype?
*How old are you?
*Your fibrosis stage (which you will know after the biopsy?
*Do you have any extrahepatic manifestations? (diseases or disorders that the Hepatitis C has caused)
*What type of work do you do?
When you start treatment depends on several factors.
Liver fibrosis stage is a big factor. If you have a low stage, 0-1 fibrosis, you may decide to wait for the newer treatments (although I would not wait, but that is me), but you have to keep in mind that no one knows when the new treatments will become available. If you are at Stage 2 it would be a good idea to think seriously about treating. If you are at Stage 3 or 4, treating becomes urgent because the clock is ticking. It is much easier to treat at the early stages of fibrosis and the success rate is higher than if one waits until one is at a higher stage of fibrosis. Stages 3 and 4 have lower SVR rates.
Another factor is, do you want to treat. Many of us wanted to treat even though we were at Stages 1 or 2 because we want to get rid of the virus ASAP.
Are you set financially ... money wise, insurance.
Do you have extrahepatic manifestations such as lymphoma, skin issues, severe fatigue, vasculitis, etc. (Diseases and disorders caused by Hep C) Hep C can cause many medical problems in areas other than the liver. So that is a consideration.
Your age may be a factor. If you are creeping up in age, then you would want to treat before you developed some medical problem that would prohibit you from treating.
As far as side effects are concerned, if you are doing only Interferon and Ribavirin, then your side effects will most likely be less severe than if you are doing the 3 drug triple med treatment. Even if you are doing the triple med treatment, the side effects vary. Some people have milder and/or few symptoms and other have more severe and/or more symptoms. You won't know until you start what your symptoms will be and how severe they will be.
Many people work through treatment. The type of job you have will probably be a factor in how much work you can do on treatment. If you have a desk job, that would be easier than if you do construction, electrical work, precision work, climb ladders, etc. People not only get weak and dizzy, they also get brain fog and the mind just is not functioning well while on treatment. Plus, if you are on triple med treatment, you MUST take that 3rd drug every eight hours. That is difficult when one is not working, and working is going to complicate taking those drugs on time.
If you do plan to keep working, it is good to have some options lined up in case working does not work out well. So it would be advisable to have a Plan B ... vacation days, sick days, comp time, short term disability, long term disability, Family Medical Leave, flex time, part time, shorter hours, or working a desk job while you are treating.
Another thing, be sure your doctor is a good one and be sure he/she is knowledgeable about treating the side effects and is willing to treat the side effects. It make all the difference in the world if you have a competent doctor and a doctor who will aggressively treat the side effects instead of ignoring them.
So, after you get your liver biopsy results, you will have a better idea of how urgent it is to treat.
Just for the record, I was diagnosed in July 2011 and had Stage 2 fibrosis. I elected to treat immediately and finished 48 weeks of treatment (Interferon, Riba, Incivek) on Aug. 25th. At 3 months post end of treatment I was still Undetectable so I have a 99.7% chance at cure. I feel better than I have felt in 19 years. All of those extrahepatic symptoms I had before treatment are now gone. I am very happy that I treated when I did and that I did not wait.
------------------------
You have not included much information in your profile or posts. It would help to know the following:
*What is your Genotype?
*How old are you?
*Your fibrosis stage (which you will know after the biopsy?
*Do you have any extrahepatic manifestations? (diseases or disorders that the Hepatitis C has caused)
*What type of work do you do?
When you start treatment depends on several factors.
Liver fibrosis stage is a big factor. If you have a low stage, 0-1 fibrosis, you may decide to wait for the newer treatments (although I would not wait, but that is me), but you have to keep in mind that no one knows when the new treatments will become available. If you are at Stage 2 it would be a good idea to think seriously about treating. If you are at Stage 3 or 4, treating becomes urgent because the clock is ticking. It is much easier to treat at the early stages of fibrosis and the success rate is higher than if one waits until one is at a higher stage of fibrosis. Stages 3 and 4 have lower SVR rates.
Another factor is, do you want to treat. Many of us wanted to treat even though we were at Stages 1 or 2 because we want to get rid of the virus ASAP.
Are you set financially ... money wise, insurance.
Do you have extrahepatic manifestations such as lymphoma, skin issues, severe fatigue, vasculitis, etc. (Diseases and disorders caused by Hep C) Hep C can cause many medical problems in areas other than the liver. So that is a consideration.
Your age may be a factor. If you are creeping up in age, then you would want to treat before you developed some medical problem that would prohibit you from treating.
As far as side effects are concerned, if you are doing only Interferon and Ribavirin, then your side effects will most likely be less severe than if you are doing the 3 drug triple med treatment. Even if you are doing the triple med treatment, the side effects vary. Some people have milder and/or few symptoms and other have more severe and/or more symptoms. You won't know until you start what your symptoms will be and how severe they will be.
Many people work through treatment. The type of job you have will probably be a factor in how much work you can do on treatment. If you have a desk job, that would be easier than if you do construction, electrical work, precision work, climb ladders, etc. People not only get weak and dizzy, they also get brain fog and the mind just is not functioning well while on treatment. Plus, if you are on triple med treatment, you MUST take that 3rd drug every eight hours. That is difficult when one is not working, and working is going to complicate taking those drugs on time.
If you do plan to keep working, it is good to have some options lined up in case working does not work out well. So it would be advisable to have a Plan B ... vacation days, sick days, comp time, short term disability, long term disability, Family Medical Leave, flex time, part time, shorter hours, or working a desk job while you are treating.
Another thing, be sure your doctor is a good one and be sure he/she is knowledgeable about treating the side effects and is willing to treat the side effects. It make all the difference in the world if you have a competent doctor and a doctor who will aggressively treat the side effects instead of ignoring them.
So, after you get your liver biopsy results, you will have a better idea of how urgent it is to treat.
Just for the record, I was diagnosed in July 2011 and had Stage 2 fibrosis. I elected to treat immediately and finished 48 weeks of treatment (Interferon, Riba, Incivek) on Aug. 25th. At 3 months post end of treatment I was still Undetectable so I have a 99.7% chance at cure. I feel better than I have felt in 19 years. All of those extrahepatic symptoms I had before treatment are now gone. I am very happy that I treated when I did and that I did not wait.
You have to be very careful when you trust your Gastro doctor's guidance. I started triple therapy 08/20/12 and am in week 21 with 3 weeks and 2 days left. I just found my bloodwork from February, 2012 and my HCV RNA was 546174, (five hundred forty six thousand...) and all of my other blood work looked great. Fibrosis from the liver biopsy shows Grade 1 (HIA Index Nodal Score 3 of 18) Stage 0. I have had a very hard time on these meds and considering that I was active and living healthy before these meds makes me just want to cry (actually I am). I have lost a tooth recently and feel that I've aged tremendously in the past 5+ months. These doctors make money off the Pharmecutical companies that make these drugs and I can't help but have some feelings of betrayal or that maybe there would have been an easier way...maybe not. All I can say is this, be careful, it's your body. I have BC/BS and maybe if they see that you have insurance and a means to meet your co-pay, then treat.
thanks for advice,its like you find out you have this and you are like,GET IT OUT OF ME,but i have been doing alot of reading and the future treatments will be much better,i just dont know how i'll work,my legs kill me now and dr. put me on lyrica last march,it helps leg pains sometimes.not all the time.i am on anxiety medicine too.but now i'll just wait and see how bad it is,the waiting is killing me.
I'm at stage one and although my doc told me I could wait another two years, I opted to treat right away. I started less than a year after finding out I had the virus.
Right now I'm wondering if I should have waiting. Some of the new drugs coming down the pipes sound more effective than the INF and Riba treatment I was on (for treatment naive people anyway.)
Most people continue to work. I had rotten sides but went in every day except for one - and that was my last day of treatment. I was on treatment for 36 weeks, but just with Interferon and Rib. I wasn't on the triple therapy.
I started treatment in Feb and went through to October. I would do that time frame again. I'm in Canada and winters are cold and dark. In the winter it is hard to get out of bed and out of the house when you feel healthy, let alone feeling sick, very tired and really cold (I was very cold on treatment - I think it might have been thyroid related.)
Good luck with your decision. Your liver biopsy will be a critical factor in your decision making process.
rk
Right now I'm wondering if I should have waiting. Some of the new drugs coming down the pipes sound more effective than the INF and Riba treatment I was on (for treatment naive people anyway.)
Most people continue to work. I had rotten sides but went in every day except for one - and that was my last day of treatment. I was on treatment for 36 weeks, but just with Interferon and Rib. I wasn't on the triple therapy.
I started treatment in Feb and went through to October. I would do that time frame again. I'm in Canada and winters are cold and dark. In the winter it is hard to get out of bed and out of the house when you feel healthy, let alone feeling sick, very tired and really cold (I was very cold on treatment - I think it might have been thyroid related.)
Good luck with your decision. Your liver biopsy will be a critical factor in your decision making process.
rk
Staging is between 0-4, 0 meaning no fibrosis and 4 means cirrhosis.
Generally, with the new better meds currently doing great in clinical trials and expected to be available in a few years, people with stage 0-2 are often choosing to wait.
Once you are at stage 2-3 you definitely want to start treatment as it is harder both if you get to stage 4, though not impossible.
One thing you need to do before you start treatment is learn more about the virus.
You can start at these web sites;
www.hepcadvocate.org
www.hepcchallenge.org
Generally, with the new better meds currently doing great in clinical trials and expected to be available in a few years, people with stage 0-2 are often choosing to wait.
Once you are at stage 2-3 you definitely want to start treatment as it is harder both if you get to stage 4, though not impossible.
One thing you need to do before you start treatment is learn more about the virus.
You can start at these web sites;
www.hepcadvocate.org
www.hepcchallenge.org
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