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Hep C 1B treatment schedules
Hi Folks;
What are the treatments like, duration, how often, emotions, etc. I am 53 and contracted this from my hospital where I had 3 stents put in. Your comments are welcome.
What are the treatments like, duration, how often, emotions, etc. I am 53 and contracted this from my hospital where I had 3 stents put in. Your comments are welcome.
Oh, let me add this. I am 66 and many others on the forum are in their 50s and 60s so those of us who are older are doing and tolerating treatment (with a little help from our friends).
"I think most of us are extremely happy that we found out that we have Hep C and that we got the chance to treat,"
I should clarify that statement. We are NOT happy we have Hep C. But we are happy that the Hep C was discovered before it does anymore damage and we are happy that we are able to treat and that the drugs have a good cure rate.
I also don't mean to appear to sugar coat the treatment. I know some people have a much easier time than others. I actually had some pretty unpleasant side effects (nausea, rectal problems, rash and itching). My treatment team did not get on top of those side effects very fast. In fact, they did not get on top of them at all, and I was the one who had to insist they treat the side effects. By then, because side effects tend to snowball if they are ignored or under treated, I was very sick. I could have had a much, much easier treatment if my treating team had known what they were doing.
I should clarify that statement. We are NOT happy we have Hep C. But we are happy that the Hep C was discovered before it does anymore damage and we are happy that we are able to treat and that the drugs have a good cure rate.
I also don't mean to appear to sugar coat the treatment. I know some people have a much easier time than others. I actually had some pretty unpleasant side effects (nausea, rectal problems, rash and itching). My treatment team did not get on top of those side effects very fast. In fact, they did not get on top of them at all, and I was the one who had to insist they treat the side effects. By then, because side effects tend to snowball if they are ignored or under treated, I was very sick. I could have had a much, much easier treatment if my treating team had known what they were doing.
Sorry for the weird ending - its easy to bump the post button accidentally when posting via iPhone. Here we go again:
...you will be injecting pegalated alpha interferon once a week. The pegalation makes it absorb gradually and minimizes the amount it fluctuates in your bloodstream. You will also be taking ribavirin tablets, most likely 3 with breakfast and 2 later in the day. These two will last throught your tx, but for the first 12 weeks only, you will also have to take Incivek tablets on a VERY strict schedule. They must be taken every 8 hours (give or take 1 hour but no more), and they must be taken with a meal containing at least 20 grams of fat. The Incivek phase is the most difficult part for most people. Forcing down the fat on such a strict schedule is hard, and the side effects tend to be worse too. If you must continue to work you'd do well to find out your options for sick leave, vacation time, going to a part-time schedule, and leave without pay if absolutely necessary. Some people can work through the whole tx, but many do find it necessary to take time off. I work only for myself, on artwork and out of my home, and I couldn't even keep up with my own self-assigned work. Again however, every body is different and responds differently to the drugs. Best wishes!
...you will be injecting pegalated alpha interferon once a week. The pegalation makes it absorb gradually and minimizes the amount it fluctuates in your bloodstream. You will also be taking ribavirin tablets, most likely 3 with breakfast and 2 later in the day. These two will last throught your tx, but for the first 12 weeks only, you will also have to take Incivek tablets on a VERY strict schedule. They must be taken every 8 hours (give or take 1 hour but no more), and they must be taken with a meal containing at least 20 grams of fat. The Incivek phase is the most difficult part for most people. Forcing down the fat on such a strict schedule is hard, and the side effects tend to be worse too. If you must continue to work you'd do well to find out your options for sick leave, vacation time, going to a part-time schedule, and leave without pay if absolutely necessary. Some people can work through the whole tx, but many do find it necessary to take time off. I work only for myself, on artwork and out of my home, and I couldn't even keep up with my own self-assigned work. Again however, every body is different and responds differently to the drugs. Best wishes!
Pooh gave you excellent information! I just looked at your profile and noted a mention of chemo. Are you referring to HCV treatment as chemo? We do sometimes feel like we're on chemo, but HCV treatment is not considered chemo, and is generally considerably less toxic to other body systems than chemo. We have a few members who have had the misfortune to experience both; maybe one of them will explain the difference. I just brought it up to make sure you aren't actually planning on doing both HCV tx and chemo together.
It you end up treating with triple tx with Incivek, you will be injecting pegalatef
It you end up treating with triple tx with Incivek, you will be injecting pegalatef
Pooh covered a lot..I will just add I have had side effects and some I find challanging..but then I usually find relief through this site...people share freely here because we all understand...
Welcome to the forum.
If you are Hep C Genotype 1B, and you elect to treat now, you would do the triple medication regimen (Interferon, Ribavirin, and either Incivek or Victrelis). Another possibility is to get into a trial with some of the newer drugs. Your liver biopsy grade and stage may help determine if you should treat now or if you can wait. Obviously, if you are at Stage 3 or 4 you should treat sooner rather than later.
The triple med treatments have a relatively high rate of cure (about 75 % overall for Genotype 1) but they are not a walk in the park. The side effects differ from person to person in intensity, severity, and manifestations. Before starting treatment, there is no way to know which side effects you will get, how many you will get, the severity of the side effects, or if you will get them at all. Some people have very few side effects. Others have more. Most people do have fatigue, some aches and flu like symptoms, muscle aches and muscle fatigue, low energy, and some cognitive effects (lack of concentration, some temporary memory problems, spacing out, etc.). Some have nausea, rash and/or itching, anemia, low white count. Those that get very anemic have much more fatigue, weakness, dizziness. Some get very depressed and others have anger issues. However, most of these symptoms are treatable and/or tolerable, and the triple med treatment as a whole is usually doable. (A very small percentage of people develop more severe problems that cause them to have to stop treatment.) Many of us have histories of depression but we are on antidepressants and doing well.
If you treat with the triple medication regimen, you will treat for 24 weeks IF you have no detectable virus at 4 weeks after starting the protease inhibitor (Incivek or Victrelis). If you are still detectable at 4 weeks after starting Incivek or Victrelis, you will treat for 48 weeks.
If you do triple med treatment with Incivek you will take Incivek every 8 hours for 12 weeks. It is crucial to take the Incivek every 8 hours (within 30 minutes after eating 20 grams of fat each time). You will also take Interferon injections weekly and you will take Ribavirin every 12 hours. You will take all 3 drugs for 12 weeks. Then you will drop the Incivek and continue with just the Interferon and the Ribavirin for the rest of the treatment. The Victrelis schedule is a little different and hopefully someone who took it will respond.
If you are working you will need to have some contingency plans in place. Many people continue working while on treatment but some cannot work due to the side effects. Then type of work is also a factor. If you have a desk job or a job that requires little physical effort, you would be in better shape to continue working. If you are in construction, do electrical work, climb poles, do heavy physical labor, balance on high beams, climb ladders, etc. then you need to have some contingency plans in case you find you cannot work on treatment. Some people use sick time, disability leave, vacation, holidays, medical leave. Some people work part time or shorter hours. The important thing is to have a Plan B and Plan C if working (Plan A) becomes too difficult to continue.
I know all of this sounds scary, but if a person wants to get rid of the Hep C, then treatment with the approved medications is the only way to do it.
Most of the people on the forum are in some stage of treatment or waiting to start treatment. Some have treated in the past and have been cured. I think most of us are extremely happy that we found out that we have Hep C and that we got the chance to treat, even if the treatment meds cause some undesirable side effects.
The new drugs in the pipeline seem to have fewer side effects but they are still in trials and it could be 3-5 years before they come on the public market.
After you have your liver biopsy you will be able to discuss the treatment with your doctor.
This is a great forum so stick around. The people are very helpful and very knowledgeable. You can ask just about any question and someone will know the answer.
Best of luck.
If you are Hep C Genotype 1B, and you elect to treat now, you would do the triple medication regimen (Interferon, Ribavirin, and either Incivek or Victrelis). Another possibility is to get into a trial with some of the newer drugs. Your liver biopsy grade and stage may help determine if you should treat now or if you can wait. Obviously, if you are at Stage 3 or 4 you should treat sooner rather than later.
The triple med treatments have a relatively high rate of cure (about 75 % overall for Genotype 1) but they are not a walk in the park. The side effects differ from person to person in intensity, severity, and manifestations. Before starting treatment, there is no way to know which side effects you will get, how many you will get, the severity of the side effects, or if you will get them at all. Some people have very few side effects. Others have more. Most people do have fatigue, some aches and flu like symptoms, muscle aches and muscle fatigue, low energy, and some cognitive effects (lack of concentration, some temporary memory problems, spacing out, etc.). Some have nausea, rash and/or itching, anemia, low white count. Those that get very anemic have much more fatigue, weakness, dizziness. Some get very depressed and others have anger issues. However, most of these symptoms are treatable and/or tolerable, and the triple med treatment as a whole is usually doable. (A very small percentage of people develop more severe problems that cause them to have to stop treatment.) Many of us have histories of depression but we are on antidepressants and doing well.
If you treat with the triple medication regimen, you will treat for 24 weeks IF you have no detectable virus at 4 weeks after starting the protease inhibitor (Incivek or Victrelis). If you are still detectable at 4 weeks after starting Incivek or Victrelis, you will treat for 48 weeks.
If you do triple med treatment with Incivek you will take Incivek every 8 hours for 12 weeks. It is crucial to take the Incivek every 8 hours (within 30 minutes after eating 20 grams of fat each time). You will also take Interferon injections weekly and you will take Ribavirin every 12 hours. You will take all 3 drugs for 12 weeks. Then you will drop the Incivek and continue with just the Interferon and the Ribavirin for the rest of the treatment. The Victrelis schedule is a little different and hopefully someone who took it will respond.
If you are working you will need to have some contingency plans in place. Many people continue working while on treatment but some cannot work due to the side effects. Then type of work is also a factor. If you have a desk job or a job that requires little physical effort, you would be in better shape to continue working. If you are in construction, do electrical work, climb poles, do heavy physical labor, balance on high beams, climb ladders, etc. then you need to have some contingency plans in case you find you cannot work on treatment. Some people use sick time, disability leave, vacation, holidays, medical leave. Some people work part time or shorter hours. The important thing is to have a Plan B and Plan C if working (Plan A) becomes too difficult to continue.
I know all of this sounds scary, but if a person wants to get rid of the Hep C, then treatment with the approved medications is the only way to do it.
Most of the people on the forum are in some stage of treatment or waiting to start treatment. Some have treated in the past and have been cured. I think most of us are extremely happy that we found out that we have Hep C and that we got the chance to treat, even if the treatment meds cause some undesirable side effects.
The new drugs in the pipeline seem to have fewer side effects but they are still in trials and it could be 3-5 years before they come on the public market.
After you have your liver biopsy you will be able to discuss the treatment with your doctor.
This is a great forum so stick around. The people are very helpful and very knowledgeable. You can ask just about any question and someone will know the answer.
Best of luck.
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