Aa
Pegasus and Ribovarin Therapy
I am about to start Pegasus and Ribovarin Therapy for the second time. My doctor said that I may not have been on this Pegasus and Ribovarin Therapy long enough the first time. I did it for 11 months. would be interested to here opinions of what myi chances are of the treatment being sucessful this time around. I was really suprised that it come back. The first time I did the treatment I became anemic and looked like a ghoast until I was able to start procrit. I lost hair got very thin, lost hair and at times became somewhat aggitated. I am hoping to be able go throught the treatment without telling anyone that I am doing it agai. I work in a medical office and am not going to tell the doctor that I work for that I am infected or going through the treatment. I am hoping for advice from this community to pull off loking healther that I am.
Daniel 2u
Daniel 2u
I lost a lot of weight last time but I just assumed it was my diet. I must say that I will not mind loosing a little weight, maybe twenty pounds. Speaking of diets, are there special foots that will help to make the treatment more sucessful?
Daniel
Daniel
Yes - yes and some --- most folks have differing side effects.
Some lose weight - some gain weight --- some can't work --- some have emotional mood swings as it alters your hormonal levels.
And some folks did go on disability because they couldn't work.
Each person is totally different.
Some lose weight - some gain weight --- some can't work --- some have emotional mood swings as it alters your hormonal levels.
And some folks did go on disability because they couldn't work.
Each person is totally different.
I had one more question. Have any of you experienced weight loos while be treated with ribavirin and interferon? Did any of you experience manic phases while being treated? Did any of you have to go on disability while being treated?
Daniel
Daniel
well I see the doctor on the 20th of May and two weeks after I will be starting my treatment. I remember to ask what was my baseline viral load before treatment? What was my viral load at week 4 and week 12 of treatment? When did I become undetectable? What doses of Pegasys and ribavirin was I on? Any dose reductions?
Thanks every one for your support and advice.
Daniel
Thanks every one for your support and advice.
Daniel
Hi Daniel.
"I don't know how this influences the treatment ...that I have been being treated for HIV for the last 15 years."
Having HIV along with HCV is called coinfection. It is an additional factor that effects this Hep C disease, its progression and your chances in achieving SVR.
There are many other people with both viruses. You are not alone. Maybe others are afraid to speak up about having HIV along with HCV? Break the silence and educate yourself on both diseases and how they interact. People with HIV and AIDS have helped us all by streamlining the drug development progress, the use of more than monotherapies (Interferon/Ribiviron) and getting the pharma business to respond to us as human beings and not just passive consumers of their products. For that we should all be grateful.
This is a good place to be yourself. We are all trying to help each other here. By adding your personal experiences you help us all!!!
Here are some links about HIV/HCV coinfection that you might find helpful:
http://www.hivandhepatitis.com/hiv_hcv_co_inf_articles.html
http://www.aidsinfonyc.org/tag/coinf/coinf.html
http://www.hcvadvocate.org/hcsp/hcsp_pdf/HIV-HCV%20coinfection%20update.pdf
http://www.cdc.gov/hiv/resources/qa/HIV-HCV_Coinfection.htm
I hope this helps!
Hector
"I don't know how this influences the treatment ...that I have been being treated for HIV for the last 15 years."
Having HIV along with HCV is called coinfection. It is an additional factor that effects this Hep C disease, its progression and your chances in achieving SVR.
There are many other people with both viruses. You are not alone. Maybe others are afraid to speak up about having HIV along with HCV? Break the silence and educate yourself on both diseases and how they interact. People with HIV and AIDS have helped us all by streamlining the drug development progress, the use of more than monotherapies (Interferon/Ribiviron) and getting the pharma business to respond to us as human beings and not just passive consumers of their products. For that we should all be grateful.
This is a good place to be yourself. We are all trying to help each other here. By adding your personal experiences you help us all!!!
Here are some links about HIV/HCV coinfection that you might find helpful:
http://www.hivandhepatitis.com/hiv_hcv_co_inf_articles.html
http://www.aidsinfonyc.org/tag/coinf/coinf.html
http://www.hcvadvocate.org/hcsp/hcsp_pdf/HIV-HCV%20coinfection%20update.pdf
http://www.cdc.gov/hiv/resources/qa/HIV-HCV_Coinfection.htm
I hope this helps!
Hector
To me it sounds like they didn't give you enough education on HCV.
It's like HIV in some ways --- and the cure rate for some genotypes is only 40%.
Looks like you cut it down a bit - but didn't quite get it all - so it replicated.
Here's to crossing my fingers for you.
Please read up and down on these posts here at the forum for the last couple of months at least --- and catch up on all the info the doctors didn't tell you about HCV.
Don't be afraid -- because you HAVE to remember this: Most of the people who turn to the internet are the ones who ARE having problems... They aren't the ones who are having an easy go at this and not looking for help... OK?
SO you're just going to see those who are having problems...
Meki
It's like HIV in some ways --- and the cure rate for some genotypes is only 40%.
Looks like you cut it down a bit - but didn't quite get it all - so it replicated.
Here's to crossing my fingers for you.
Please read up and down on these posts here at the forum for the last couple of months at least --- and catch up on all the info the doctors didn't tell you about HCV.
Don't be afraid -- because you HAVE to remember this: Most of the people who turn to the internet are the ones who ARE having problems... They aren't the ones who are having an easy go at this and not looking for help... OK?
SO you're just going to see those who are having problems...
Meki
My ribavirin and interferon doses were based on my weight. I am now 175 lbs. When I first starated my treatment 2/14/06 my weight was 184lbs. Two months into the treatment I begain a 40 day (partial) fast for religious reasons and dropped 35 lbs. I was at a very loweight but still with in a normal range. When I began the treatment I had no inflammation of the liver. I am not sure becasue after I ended the treatment I wanted to put the whole hep c deal behind me. As I say I will get all the information next time I see the doctor which is a different doctor that than Istarted with. The doctor I have now (I have only seen one time and I am not sure I like her) reviewed my biopsy for my previous doctor. Then she said that I had fat marbling in my liver. I don't exactly know what that means. I believe that there are four stages of hep c. I was at stage two or moderate. I appologize for my ignorance but I am stilled in shock finding that it came back.
Pax
Daniel
Pax
Daniel
Daniel - First -- there are a LOT of folks here who are Combo HIV and HCV.
So you can get some good information from them. CIRQUEDUSOLEIL is one and he has a decent grip on reality in order to help you out. And a GREAT sense of humor too!
Keep laughter in your life.
As for HIV and HCV treatment combinations ---- Well they are 2 different diseases - and I am not sure how one affects the other. Or how the combined treatments will affect each other - or the person taking them.
I do understand that HIV and HCV --- seem to walk hand in hand for some folks --- and no one seems to understand the hows or whys of it just yet.
But I'm wondering if the immune system plays a major role in this.
So I'm thinking --- that perhaps you should read up on the SUPPLEMENT threads ---- and again - I'm not Either for or against supplements - but I've been watching with interest the discussion - and CS and gauf's reactions.
I don't know if those items can help you or not -- but research them. OK?
Now as to looking good --- or wearing makeup --- or touching people...
I think using universal precautions to keep this disease from spreading is very important.
I think that you MUST treat yourself well - and hydrate well. Lots of water is the key for some folks.
Lots of bubblegum (LOL - my mouth was constantly dry)
Learn more about HCV - and while I realize it kinda takes a backseat to the HIV --- learn about it --- and see how it functions --- then you'll have a better understanding of a lot of the things we talk about on here.
When you have specific problems with TX - we can help you through it -- -but each person responds differently to the medication - some don't even notice it -- while others are struck down in their tracks.
Much luck to you!
Meki
So you can get some good information from them. CIRQUEDUSOLEIL is one and he has a decent grip on reality in order to help you out. And a GREAT sense of humor too!
Keep laughter in your life.
As for HIV and HCV treatment combinations ---- Well they are 2 different diseases - and I am not sure how one affects the other. Or how the combined treatments will affect each other - or the person taking them.
I do understand that HIV and HCV --- seem to walk hand in hand for some folks --- and no one seems to understand the hows or whys of it just yet.
But I'm wondering if the immune system plays a major role in this.
So I'm thinking --- that perhaps you should read up on the SUPPLEMENT threads ---- and again - I'm not Either for or against supplements - but I've been watching with interest the discussion - and CS and gauf's reactions.
I don't know if those items can help you or not -- but research them. OK?
Now as to looking good --- or wearing makeup --- or touching people...
I think using universal precautions to keep this disease from spreading is very important.
I think that you MUST treat yourself well - and hydrate well. Lots of water is the key for some folks.
Lots of bubblegum (LOL - my mouth was constantly dry)
Learn more about HCV - and while I realize it kinda takes a backseat to the HIV --- learn about it --- and see how it functions --- then you'll have a better understanding of a lot of the things we talk about on here.
When you have specific problems with TX - we can help you through it -- -but each person responds differently to the medication - some don't even notice it -- while others are struck down in their tracks.
Much luck to you!
Meki
Daniel, I was just surprised that you don't know your genotype. Treatment duration and genotype are directly related. Made me wonder how well your doc communicates with you.
You certainly seem to have been monitored well enough. I'm wondering at what week you cleared the virus the first round of treatment? That has some bearing on SVR rates and that's why I ask.
Also, as Zazza asked, wondering what your dosage of ribavirin and interferon were and what your weight is. It's now becoming the accepted course of treatment to do weight-based ribavirin and I believe it to be essential. Not enough ribavirin can
Not sure what you mean by how people in the forum will react to the fact that you have been treated for HIV for the last 15 years. If you're expecting judgment, there is none to be found here. It simply puts more clarity on your situation with regards to treatment.
Take care, Daniel.
Trish
You certainly seem to have been monitored well enough. I'm wondering at what week you cleared the virus the first round of treatment? That has some bearing on SVR rates and that's why I ask.
Also, as Zazza asked, wondering what your dosage of ribavirin and interferon were and what your weight is. It's now becoming the accepted course of treatment to do weight-based ribavirin and I believe it to be essential. Not enough ribavirin can
Not sure what you mean by how people in the forum will react to the fact that you have been treated for HIV for the last 15 years. If you're expecting judgment, there is none to be found here. It simply puts more clarity on your situation with regards to treatment.
Take care, Daniel.
Trish
My visits to the doctor were once a month. I would have a blood draw one week later I would see the doctor two weeks later another blood draw and back to the doctor. Basically I was at the clinic every weeks for a year. I completed the treatment January of 2007. Since I have seen the doctor every three months. I don't know how this influences the treatment ment or how people in this forum will react to the fact that I have been being treated for HIV for the last 15 years.
Pax
Pax
Daniel, there are certain things you say about your treatment experience that make me wonder about the experience of your doctor. Have you considered getting a second opinion before proceeding with a second round of treatment?
I'm wondering how often you were tested for your viral load during treatment and at what week you cleared the virus?
Did you have any dosage reductions while you were on treatment? and I'm wondering what your dosages were for your interferon and your ribavirin in particular.
How long ago was your first treatment?
As you proceed through treatment, you will find support here. Good luck, Daniel.
Trish
I'm wondering how often you were tested for your viral load during treatment and at what week you cleared the virus?
Did you have any dosage reductions while you were on treatment? and I'm wondering what your dosages were for your interferon and your ribavirin in particular.
How long ago was your first treatment?
As you proceed through treatment, you will find support here. Good luck, Daniel.
Trish
Thank all of you for your input. I will see the doctor again at the end of this month. As for my genotype I will have to ask about it. I did have a biopsy done the before the first treatment and I don't believe that I will be having it done again before this treatment. My viral load during treatment last time went to undetectable.
I lost my job when I went through treatment because I lost my temper with a patient. I was working in home care at the time. I think that I held up mood wise but I was doing some crazy things at times I am told. I developped hyper fatigue which means that I did not physically get tired or sleep more than an hour and a half at night so I was sleep deprived.
I have to run now. Later today or tomorrow I will try to explain my concern about work.
zazza, when I see the doctor at the end of the month I will get the more details and let you know. Your questions lead me to believe that you are very knowledgeable.
I really appreciate advice from all of you. I also, hope I will be welcome to come to this forum when I have more questions.
Pax
Daniel
I lost my job when I went through treatment because I lost my temper with a patient. I was working in home care at the time. I think that I held up mood wise but I was doing some crazy things at times I am told. I developped hyper fatigue which means that I did not physically get tired or sleep more than an hour and a half at night so I was sleep deprived.
I have to run now. Later today or tomorrow I will try to explain my concern about work.
zazza, when I see the doctor at the end of the month I will get the more details and let you know. Your questions lead me to believe that you are very knowledgeable.
I really appreciate advice from all of you. I also, hope I will be welcome to come to this forum when I have more questions.
Pax
Daniel
I am genotype 1 and just finished 72 weeks of treatment. The people on the forum will be happy to help you with your questions, but if you want us to be able to say anything about your chances with a second treatment, you have to give us more information.
What genotype are you? Have you had a biopsy done?
What was your baseline viral load before treatment? What was your viral load at week 4 and week 12 of treatment? When did you become undetectable? What doses of Pegasys and ribavirin were you on? Any dose reductions? You might want to state your weight, so we can see if you were on weight based dosing.
Take care!
What genotype are you? Have you had a biopsy done?
What was your baseline viral load before treatment? What was your viral load at week 4 and week 12 of treatment? When did you become undetectable? What doses of Pegasys and ribavirin were you on? Any dose reductions? You might want to state your weight, so we can see if you were on weight based dosing.
Take care!
Sorry if I was rude...I apologize. I don't want to add to your stress. This illness is no picnic. Again, I'm sorry.
You don't have to tell anyone at work anything about your health, period!!! Read about employee rights and medical issues. Do cancer patient come to work one day and say "hey boss I got cancer". No way! No one can make you say anything about your health. Your health is your business. It is your legal right to say nothing. It is the law. You think I tell my co-workers I have cirrhosis of the liver and am failing to clear the virus right now? And maybe I'll need to have a liver transplant sometime in the future? No way!!! I may be ill but I'm not crazy!!! The love of my life left me when I told her about my illness six months ago. She just couldn't handle it. If I couldn't trust her to support me though the tough times I certainly don't trust people at work.
If someone is stupid enough to ask you what is wrong with your health be smart enough to have some vague answer about a chronic sinus infection. Or you can tell them straight out, "Sorry but that is a private, personal issue for me." Maybe they'll get the message. Have you ever asked someone you thought had a serious illness what was wrong with them? Right. Most people don't.
I've been paying my taxes and health insurance premiums for 30 years plus. Now that I need some assistance I want my fair share of the resources I've been paying into and not using for decades. In 2003 I paid over $100,000 in taxes. I don't deserve to be helped when I need it??? Please!
If the tx is affecting your ability to work your doctor can write a generic note explaining why you may have to be away from work for treatment if you need too. It's part of the Family Leave and Disabilities Act. IT'S THE LAW! If you really think they might fire you at some point because your missing work due to side effects for example, Have your doctor put you on disability. You pay your taxes don't you? You've been paying for benefits for years. If you need it, that's what it is for. Your job is secure for a certain amount of time (90 day?) AND they cannot touch your health insurance coverage (for at least a year). This tx can costs a lot of over time.
Think about it. How many people have cancer, heart disease or other chronic conditions that they have to be treated for. Or have babies. Bringing new life into this world. This is part of doing business. A company can't hire only healthy, never ill people. In time all of us because ill. It's the human condition. We are not robots or machines. And even they breakdown.
Yes, there are a lot of ignorant people in the world. That's THEIR problem. NOT yours. I'm not saying it doesn't hurt. It does. Hurts like hell. But there is something wrong with them, not you. Ever look at the news? My god it's sad. Do we ever learn from our past mistakes? I've been around long enough to know that human beings do some horrible things to one another. Some people not only label people but kill people because of "labels" race, religion, sexual orientation, gender, nationality, etc. Remember the things some of our so-called American leaders said about people infected with HIV/AIDS. "It's god's punishment". Talk about cruel, hateful, and sick!!! Lucky for us most of the American people don't even know what Hep C is.
We don't want to be like them. This illness can make you humble and give you a real perspective on what matters in life. In that way it can be a positive thing you can bring to other parts of your life. Having this disease you find out who in your life really cares about you and who doesn't. Don't worry about the people that don't care about you. Focus your energy on people who are caring and supportive. I think you will find some very caring and knowledgeable people here. Keep posting. Share with people here what you can't share at work. Alway treat yourself with love and dignity. Even if other don't
Best of luck with your treatment! Confide in your friends or join a Hep C group. Keep posting. You are not alone.
Hector
You don't have to tell anyone at work anything about your health, period!!! Read about employee rights and medical issues. Do cancer patient come to work one day and say "hey boss I got cancer". No way! No one can make you say anything about your health. Your health is your business. It is your legal right to say nothing. It is the law. You think I tell my co-workers I have cirrhosis of the liver and am failing to clear the virus right now? And maybe I'll need to have a liver transplant sometime in the future? No way!!! I may be ill but I'm not crazy!!! The love of my life left me when I told her about my illness six months ago. She just couldn't handle it. If I couldn't trust her to support me though the tough times I certainly don't trust people at work.
If someone is stupid enough to ask you what is wrong with your health be smart enough to have some vague answer about a chronic sinus infection. Or you can tell them straight out, "Sorry but that is a private, personal issue for me." Maybe they'll get the message. Have you ever asked someone you thought had a serious illness what was wrong with them? Right. Most people don't.
I've been paying my taxes and health insurance premiums for 30 years plus. Now that I need some assistance I want my fair share of the resources I've been paying into and not using for decades. In 2003 I paid over $100,000 in taxes. I don't deserve to be helped when I need it??? Please!
If the tx is affecting your ability to work your doctor can write a generic note explaining why you may have to be away from work for treatment if you need too. It's part of the Family Leave and Disabilities Act. IT'S THE LAW! If you really think they might fire you at some point because your missing work due to side effects for example, Have your doctor put you on disability. You pay your taxes don't you? You've been paying for benefits for years. If you need it, that's what it is for. Your job is secure for a certain amount of time (90 day?) AND they cannot touch your health insurance coverage (for at least a year). This tx can costs a lot of over time.
Think about it. How many people have cancer, heart disease or other chronic conditions that they have to be treated for. Or have babies. Bringing new life into this world. This is part of doing business. A company can't hire only healthy, never ill people. In time all of us because ill. It's the human condition. We are not robots or machines. And even they breakdown.
Yes, there are a lot of ignorant people in the world. That's THEIR problem. NOT yours. I'm not saying it doesn't hurt. It does. Hurts like hell. But there is something wrong with them, not you. Ever look at the news? My god it's sad. Do we ever learn from our past mistakes? I've been around long enough to know that human beings do some horrible things to one another. Some people not only label people but kill people because of "labels" race, religion, sexual orientation, gender, nationality, etc. Remember the things some of our so-called American leaders said about people infected with HIV/AIDS. "It's god's punishment". Talk about cruel, hateful, and sick!!! Lucky for us most of the American people don't even know what Hep C is.
We don't want to be like them. This illness can make you humble and give you a real perspective on what matters in life. In that way it can be a positive thing you can bring to other parts of your life. Having this disease you find out who in your life really cares about you and who doesn't. Don't worry about the people that don't care about you. Focus your energy on people who are caring and supportive. I think you will find some very caring and knowledgeable people here. Keep posting. Share with people here what you can't share at work. Alway treat yourself with love and dignity. Even if other don't
Best of luck with your treatment! Confide in your friends or join a Hep C group. Keep posting. You are not alone.
Hector
I think you are entitled to whatever level of privacy you want.
I don't think anyone has the right to decide for you or be a critic as it relates
to who you tell or how you handle your personal situation.
Everyone has different issues and different reasons for what they do and feel.
You don't have to broadcast you personal health issues to anyone. There are lots of people who never talk about their health concerns.
I really don't know what to tell you because I have not gone past two weeks on treatment
before I was stopped, but if I did I would not hesitiate to share the info with you.
You know what your first experience was like better than any of us and I thinks it's within you rights to decide who you want to know about it this time around.
I will pray that you have a good run this time and you will be able to keep it under wraps if that is you desire.
I can understand perfectly that you may not want to tell people your first treatment did not produce SVR.
I don't think your desire for privacy has anything to do with being vain because not everyone wants to share their personal issues with th world and that is certainly you right.
I am sure their are many people who get treatment and tell only those they feel it is necessary to share the info with.
I'll be praying that you can get through treatment with whatever level of privacy you want.
God Bless You
Rosebud
I don't think anyone has the right to decide for you or be a critic as it relates
to who you tell or how you handle your personal situation.
Everyone has different issues and different reasons for what they do and feel.
You don't have to broadcast you personal health issues to anyone. There are lots of people who never talk about their health concerns.
I really don't know what to tell you because I have not gone past two weeks on treatment
before I was stopped, but if I did I would not hesitiate to share the info with you.
You know what your first experience was like better than any of us and I thinks it's within you rights to decide who you want to know about it this time around.
I will pray that you have a good run this time and you will be able to keep it under wraps if that is you desire.
I can understand perfectly that you may not want to tell people your first treatment did not produce SVR.
I don't think your desire for privacy has anything to do with being vain because not everyone wants to share their personal issues with th world and that is certainly you right.
I am sure their are many people who get treatment and tell only those they feel it is necessary to share the info with.
I'll be praying that you can get through treatment with whatever level of privacy you want.
God Bless You
Rosebud
It is being labeled........I was just diagnosed with Hep C and work now in sales due to Katrina, but I am afraid to tell my job, not because I need to look good but ashamed because of being labeled..........when people mention Hep C it is like I don't want to touch you, they stand at a distance, I work in makeup and I know I will not be able to tell anyone even though I have been told I have probably had Hep C for years...which I seem to have caught it from a blood transfusion from surgery...so we seem.........I don't know what to tell my job, afraid that they might let me go due to the stigma that people have about Hep C...so my mouth will remain shut and I have no idea what I will be going through except for the stories that I have read online...My prayers go out to all that have Hep C and I had no idea how many of us were out there....but I am glad to have you to read and follow through with......when I start my shots and medication I hope you are there for me............"lead the way and i will follow, follow me and i will lead you away"meme1952
What's the big secret? You work in a medical office. If they don't understand that a disease needs to be treated, who will??? Where is all this shame coming from? Maybe you should think about dealing with your issues around HCV or your looks first before starting tx. Psst...a tip. Better not to wear a bathing suit to work on casual Fridays. It might become real obvious that you are being treated.
I would be more worried about having a disease that can lead to liver failure and death then looking good for work for a year. If you are serious about you’re number one priority being "to look good for WORK"? Do you work with JLo, Mariah Carey, and Gwyneth Paltrow or something? If so, then why treat again? You probably have decades of looking good and partying with your work friends until your cirrhosis begins to decompensate. By then you'll have used up your 9 lives...Not to worry though. You'll have the best stories to tell the transplant center nurses! I don't want to shock you by explaining want happens to your body at that point. Best to stay in your world of movie queens, music videos, GQ. By then maybe you’ll have grown up enough to realize life is more than about looking good.
If you are truly seeking advice it would be helpful if you stated some basic history about your HCV status, previous tx experience etc. for others to base their opinions upon.
Who needs a shot of Peg to feel aggravated?
Hector
I would be more worried about having a disease that can lead to liver failure and death then looking good for work for a year. If you are serious about you’re number one priority being "to look good for WORK"? Do you work with JLo, Mariah Carey, and Gwyneth Paltrow or something? If so, then why treat again? You probably have decades of looking good and partying with your work friends until your cirrhosis begins to decompensate. By then you'll have used up your 9 lives...Not to worry though. You'll have the best stories to tell the transplant center nurses! I don't want to shock you by explaining want happens to your body at that point. Best to stay in your world of movie queens, music videos, GQ. By then maybe you’ll have grown up enough to realize life is more than about looking good.
If you are truly seeking advice it would be helpful if you stated some basic history about your HCV status, previous tx experience etc. for others to base their opinions upon.
Who needs a shot of Peg to feel aggravated?
Hector
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