Aa
Speaking of side effects......
You know what really annoys me..... I can still hear the specialist saying to me in my first appointment, 'there's hardly any side effects now, noooo.....'. How can a professional say that, who is prescribing this treatment... Is she just lying and why?
need to clarify. My blood tests at 8 and 12 weeks showed the virus is UNDetected. I have over a year to go til I will believe I am out of the woods.
No,I'm not through it yet. I have cleared the virus and I have finished my 3 months of Incivek (Telaprevir), but need to complete the full 48 weeks of ribavirin and Interferon. I finish in Jan 2014.
Treatment for this disease will get better. Just as it has for HIV. Just as it has for certain cancers.
To look after yourself psychologically, physically and emotionally will always hold you in good stead. It may not lessen the SX, but you will be better able to deal with them. Just as if you keep a healthy mind, you may be in a better place to recognise when your mind isn't so well.
But I thought I was tough, and this took me by surprise.
I really hope that much overused 'Whatever doesn't kill you makes you stronger' stuff works here.
Lastly, what's a healthy constitution when you have an incidious virus multiplying in your system, and quietly destoying your liver?
But I agree. Always try to eat as healthily as you can. Prepare your self for the trreatment.
Treatment for this disease will get better. Just as it has for HIV. Just as it has for certain cancers.
To look after yourself psychologically, physically and emotionally will always hold you in good stead. It may not lessen the SX, but you will be better able to deal with them. Just as if you keep a healthy mind, you may be in a better place to recognise when your mind isn't so well.
But I thought I was tough, and this took me by surprise.
I really hope that much overused 'Whatever doesn't kill you makes you stronger' stuff works here.
Lastly, what's a healthy constitution when you have an incidious virus multiplying in your system, and quietly destoying your liver?
But I agree. Always try to eat as healthily as you can. Prepare your self for the trreatment.
Hi love, my god, it sounds like a bloody nightmare, but you're through it now, aren't you? Free medical here in Oz makes a big, big difference... Doesn't it? Were you able to work? How were you feeling before the treatment..?? Sorry Asle, you've probably been through this... What I find difficult to contemplate, sure I'm not alone here is going from seeming to be feeling healthy, to such a hellish experience in treatment.... If I am unfortunate to have bad side fx... But then having healthy constitution, do you think that helps?
One thing I have learnt is that it's about the end result, not about the side effects. Yes, I would have treated if I had've known how sick I was going to be. I needed to treat NOW.
Another thing I have realized is, unless you are extremely lucky, no doctor is going to waste more of their valuable time with you if you don't appear to understand your disease or the treatments. As soon as I found the MedHelp site, I became confident and empowered. I went with a list of questions, and the change in attitude between my medical team and me was huge.
Be aware though, FiFi, that this IS a predominately US site, so a lot of specific information may differ.
Just re; side effects. I wish my team had prepared me a little for the possible Sx I may experience. I would've bought the diarrhoea medicine, the anal creams etc, and not freaked when I shat broken glass and razor blades, with blood to boot. If I had been given a strong prescription ointment and knew to take antihistamines when the rash appeared, already dangerous looking within 2 hours of taking Incivo.
I wish I had been directed to what to do when my gums began to bleed so badly.
But this is what this forum is for. Questions and mostly considered answers.
I am going to meet with the Head Nurse at Liver Clinis this wednesday, and ask her why so little information was given to me about possible SX and how to deal with them.
Anyway, stay calm, read a lot, ask questions, prepare yourself for treatment. And take care of yourself.
Another thing I have realized is, unless you are extremely lucky, no doctor is going to waste more of their valuable time with you if you don't appear to understand your disease or the treatments. As soon as I found the MedHelp site, I became confident and empowered. I went with a list of questions, and the change in attitude between my medical team and me was huge.
Be aware though, FiFi, that this IS a predominately US site, so a lot of specific information may differ.
Just re; side effects. I wish my team had prepared me a little for the possible Sx I may experience. I would've bought the diarrhoea medicine, the anal creams etc, and not freaked when I shat broken glass and razor blades, with blood to boot. If I had been given a strong prescription ointment and knew to take antihistamines when the rash appeared, already dangerous looking within 2 hours of taking Incivo.
I wish I had been directed to what to do when my gums began to bleed so badly.
But this is what this forum is for. Questions and mostly considered answers.
I am going to meet with the Head Nurse at Liver Clinis this wednesday, and ask her why so little information was given to me about possible SX and how to deal with them.
Anyway, stay calm, read a lot, ask questions, prepare yourself for treatment. And take care of yourself.
Very good information, thank you so much for sharing.
I am with you, treated twice to get to SVR. I am very grateful that I was lucky enough to get to SVR.
I thank God that I was given a second chance to treat.
I did have sx but to save my life it was all worth it. I would do it again.
Thanks again for your comments, Dee :)
I am with you, treated twice to get to SVR. I am very grateful that I was lucky enough to get to SVR.
I thank God that I was given a second chance to treat.
I did have sx but to save my life it was all worth it. I would do it again.
Thanks again for your comments, Dee :)
Don't be a guinea pig...be an active part of your health and life...think you have a good start by coming here.
Find a hepatologist you trust. My first hepatologist told me I had 30-60 days to live. That was in 1996. I told him that he needed to go out the door and find me a hepatologist who had a more progressive attitude towards this disease. He did. I was fortunate to give one of the best who has since gone into research in this area but before he left he left me in the hands of an associate who is so educated in this disease and the liver that I have been fortunate.
It is dependent on where you are at in your diagnosis if you do or don't have time to wait for a miracle cure. That info you can obtain from lab reports and some of the senior posters here can help you understand where you are at.
Yes it is unfortunate that you have HCV but you are fortunate that you are in this decade and there are so many things finally coming down the pipeline. In 1996 there were few options..
Have you been in any trial that included interferon? I was a non-responder in every trial I was put in so I was "forced" to wait for the next "if". If my body had responded to one of these trials I might not be sitting here waiting for acceptance on a pre- transplant list and then the inevitable waiting for a liver. As I said in my one post, there are 17,000 people waiting for a liver transplant, only 4000 will get one this year.
And no, not all of them are on that list because of HCV. But the majority of people who have HCV and do not respond to treatment know that they will probably get cirrhosis of the liver.
Then cirrhosis of the liver itself has so many different levels and stages. I am at Stage 4, with a decompensated liver. Meaning that even if today they came out with a miracle pill and cured my HCV I would still have to get a transplant because my liver has been so damaged. If you have cirrhosis but your liver is compensated then the liver had an opportunity to rejuvenate itself. Once a liver decompensates is will not regenerate.
I am sure I'll get senior posters who want website facts to that but here is the only fact I can give you...me. I am, like many others on this site, living it. Sadly because I am the eternal optimist, it took my doctor who is one of the top hepatologists in the US and very involved on the panels for the creation of new drugs to fight this....it took him over a year to get me to really....."really" listen to what he was saying. Finally, it sunk in. No matter how much a fighter I am, no matter how open I am to any treatment....it just didn't matter because my liver had to be replaced anyway because it was so decompensated.
That might be too much info for you to ingest but it is important for you to realize that you have to be the ACTIVE participant in your quest to rid your body of HCV. Doctors, specialists, think in one line....they focus on what they do. They need to be an active participant in your health. If you come in to the doctor with a list of pertinent questions they will pay attention. I won't let my doctor out of the room until I have all my questions answered. One day one of the several interns that always follow him around said that they didn't have time to answer all of these questions at this time and I said "Excuse me...I'm paying him $260 for 15 minutes of his brain time and I am getting it so either sit down, learn, or leave". My doctor cracked up. From that point on he is prepared for me to come at him with info I learn from this site and a few questions.
Senior posters on this site can tell you of doctors in your general area that are well regarded. Do not go to anyone for HCV who is not a hepatologist. It is just a waste of your time. GP's, family docs, even internists, do not have the knowledge that a hepatologist / liver specialist has.
And, just an FYI, you'd be surprised how many people working in the medical fields have HCV....it is a large percentage...last I heard it was high which only makes sense. So even if they themselves do not have it, they may have a family member, friend or associate who does.
Find a hepatologist you trust. My first hepatologist told me I had 30-60 days to live. That was in 1996. I told him that he needed to go out the door and find me a hepatologist who had a more progressive attitude towards this disease. He did. I was fortunate to give one of the best who has since gone into research in this area but before he left he left me in the hands of an associate who is so educated in this disease and the liver that I have been fortunate.
It is dependent on where you are at in your diagnosis if you do or don't have time to wait for a miracle cure. That info you can obtain from lab reports and some of the senior posters here can help you understand where you are at.
Yes it is unfortunate that you have HCV but you are fortunate that you are in this decade and there are so many things finally coming down the pipeline. In 1996 there were few options..
Have you been in any trial that included interferon? I was a non-responder in every trial I was put in so I was "forced" to wait for the next "if". If my body had responded to one of these trials I might not be sitting here waiting for acceptance on a pre- transplant list and then the inevitable waiting for a liver. As I said in my one post, there are 17,000 people waiting for a liver transplant, only 4000 will get one this year.
And no, not all of them are on that list because of HCV. But the majority of people who have HCV and do not respond to treatment know that they will probably get cirrhosis of the liver.
Then cirrhosis of the liver itself has so many different levels and stages. I am at Stage 4, with a decompensated liver. Meaning that even if today they came out with a miracle pill and cured my HCV I would still have to get a transplant because my liver has been so damaged. If you have cirrhosis but your liver is compensated then the liver had an opportunity to rejuvenate itself. Once a liver decompensates is will not regenerate.
I am sure I'll get senior posters who want website facts to that but here is the only fact I can give you...me. I am, like many others on this site, living it. Sadly because I am the eternal optimist, it took my doctor who is one of the top hepatologists in the US and very involved on the panels for the creation of new drugs to fight this....it took him over a year to get me to really....."really" listen to what he was saying. Finally, it sunk in. No matter how much a fighter I am, no matter how open I am to any treatment....it just didn't matter because my liver had to be replaced anyway because it was so decompensated.
That might be too much info for you to ingest but it is important for you to realize that you have to be the ACTIVE participant in your quest to rid your body of HCV. Doctors, specialists, think in one line....they focus on what they do. They need to be an active participant in your health. If you come in to the doctor with a list of pertinent questions they will pay attention. I won't let my doctor out of the room until I have all my questions answered. One day one of the several interns that always follow him around said that they didn't have time to answer all of these questions at this time and I said "Excuse me...I'm paying him $260 for 15 minutes of his brain time and I am getting it so either sit down, learn, or leave". My doctor cracked up. From that point on he is prepared for me to come at him with info I learn from this site and a few questions.
Senior posters on this site can tell you of doctors in your general area that are well regarded. Do not go to anyone for HCV who is not a hepatologist. It is just a waste of your time. GP's, family docs, even internists, do not have the knowledge that a hepatologist / liver specialist has.
And, just an FYI, you'd be surprised how many people working in the medical fields have HCV....it is a large percentage...last I heard it was high which only makes sense. So even if they themselves do not have it, they may have a family member, friend or associate who does.
Fair enough but I don't want to feel like a guinea pig in the hands of doctors who are very removed from the lifestyle that has led many to this diagnosis!
Thanks, I've deferred treatment for six months. Hoping that new treatment will come in but even then I am wary of the side effects...
The answers on this thread and your other post show why it is helpful....doctors will/won't/can/can not predict the future of your side effects. All they can do is tell you what they could be. Do they sugar coat. No..it is just factual to them.. Do they scare you. They shouldn't. And you can always change doctors if you are unhappy. You have choices.
I am finding your posts and comments interesting....on your other thread someone asked you what you were seeking in answers and had you gotten them...then on another post you were giving someone information??? I have learned a long time ago to only relay my personal experiences and not state "facts" as the senior posters will ask you for your backup information.
I sat in a group of about 20-25 people getting ready to do tx and every single person in the group stated different things. So many had so much mis-information it was mind boggling. Orphan is correct.....make a list of your questions for your doctor... Read. Learn. Go to CDC and university websites that treat HCV. Go to the websites for the medicine you are taking...read the enclosure they give you with the medication. Make note of the websites the senior posters list. And realize that you are an individual and your reactions will be completely different or may be similar to someone else's but they are yours alone. No one can predict them.
I am finding your posts and comments interesting....on your other thread someone asked you what you were seeking in answers and had you gotten them...then on another post you were giving someone information??? I have learned a long time ago to only relay my personal experiences and not state "facts" as the senior posters will ask you for your backup information.
I sat in a group of about 20-25 people getting ready to do tx and every single person in the group stated different things. So many had so much mis-information it was mind boggling. Orphan is correct.....make a list of your questions for your doctor... Read. Learn. Go to CDC and university websites that treat HCV. Go to the websites for the medicine you are taking...read the enclosure they give you with the medication. Make note of the websites the senior posters list. And realize that you are an individual and your reactions will be completely different or may be similar to someone else's but they are yours alone. No one can predict them.
Before I began treatment I had to meet with the hepatic nurse practitioner who was assisting my hepatologist with hep C patients.
She gave me a long list of potential side effects.
I know it isn't always possible but it sure does help to have a team that is very experienced in the treatment and knows the importance of educating the patient.
This is why I made a list of questions for the newly diagnosed to consider before tx. It's in my profile.
Why you would be told what you were in unanswerable. All we can do is guess at the motive.
She gave me a long list of potential side effects.
I know it isn't always possible but it sure does help to have a team that is very experienced in the treatment and knows the importance of educating the patient.
This is why I made a list of questions for the newly diagnosed to consider before tx. It's in my profile.
Why you would be told what you were in unanswerable. All we can do is guess at the motive.
No I would not have.... But in all honesty my doc. did tell me he was going to make me sick and lose weight...well he was right ,took my 28th injection last night, sick as heck. Do I want to throw in the towel YES YES YES, but I made a choice to go as far as my body would allow me.
In all fairness if they did tell you about the possibility of the hard side effects would you still do it? So many who do this have minor side effects. Doctors can't establish you just looking at you if will have good or bad side effects. Doctors are limited by the information that is provided to them by the patient. Patients need to be participants in their health. How many times is someone asked a question but it's not answered truthfully. The base their options on information we provide them.
Here is a thought. What do you have to lose? If it works, great....if you had bad side effects and can't tolerate it at least as you on your future road to cirrhosis of the liver with the possibility of death you can at least say you gave it a try. 17,000 people are on the liver transplant list...only approximately 4000 of those people will get a new liver and 15% of those who do will face failure.
What I am trying to say to you is....HCV will not go away on it's own and will eventually led to worse problems. No one is forcing anyone to go on to this treatment. It is an option for YOU to decide if you want to be on it or not. As with anything...read up on any available information by going to the websites for the drugs themselves and reading the good and bad on sites like this. It is your choice. It is their assumption that you will do fine or they would not offer the treatment to you
And all episiotomies are a b****.... ah, but you just had a blessed event...so it should be worth it, right? LOL. Ouch. But seriously ALL surgeries have some pain. Some have more pain. I have yet to have a surgery that there hasn't been a complication to...but that is because each of us are made up of a million different components.
I have had adverse reactions to all HCV trials I have been on. Would I do them again. Yes. Because to do nothing is to give up. If they told me today we have something for you to try....it will make you dreadfully sick...but it will cure you of your HCV and you will not have to have a liver transplant would I do it. YES.
Maybe everyone who finds such fault with all the trials should read up or view a liver transplant operation. I think the University of Washington has some good info...if you can't find it...let me know and I will send you a link. It just might made you appreciate the other side of the picture.
Here is a thought. What do you have to lose? If it works, great....if you had bad side effects and can't tolerate it at least as you on your future road to cirrhosis of the liver with the possibility of death you can at least say you gave it a try. 17,000 people are on the liver transplant list...only approximately 4000 of those people will get a new liver and 15% of those who do will face failure.
What I am trying to say to you is....HCV will not go away on it's own and will eventually led to worse problems. No one is forcing anyone to go on to this treatment. It is an option for YOU to decide if you want to be on it or not. As with anything...read up on any available information by going to the websites for the drugs themselves and reading the good and bad on sites like this. It is your choice. It is their assumption that you will do fine or they would not offer the treatment to you
And all episiotomies are a b****.... ah, but you just had a blessed event...so it should be worth it, right? LOL. Ouch. But seriously ALL surgeries have some pain. Some have more pain. I have yet to have a surgery that there hasn't been a complication to...but that is because each of us are made up of a million different components.
I have had adverse reactions to all HCV trials I have been on. Would I do them again. Yes. Because to do nothing is to give up. If they told me today we have something for you to try....it will make you dreadfully sick...but it will cure you of your HCV and you will not have to have a liver transplant would I do it. YES.
Maybe everyone who finds such fault with all the trials should read up or view a liver transplant operation. I think the University of Washington has some good info...if you can't find it...let me know and I will send you a link. It just might made you appreciate the other side of the picture.
hi there i agree with you perhaps they should try the tx We live in England and at our main hospital we to was told it just felt like flu! What a joke!! But saying that everybody is different and i wish you all the best
Reminds me of the Dr. who told me that it "did not hurt" when he was sewing up my episiotomy.
Maybe if we pretend something is not unpleasant then it will be so?
Wish it was that easy.
Maybe if we pretend something is not unpleasant then it will be so?
Wish it was that easy.
I was never told that my first shot could make me extremely sick and 103* fever. That totally blindsided me and this forum got me through.
I know how you feel, telling us it was like having the flu and we would get used to it is bull.
I think they might be hoping that you don't get the awful sx, some people have mild sx.
I did not have mild but I think some do. I was told it depended on the severity of damage to the liver however not sure I believe that.
To me it is similar to a surgeon who tells you you will recover from back surgery in two weeks.
Do you need help or advice for your sx?
I think they might be hoping that you don't get the awful sx, some people have mild sx.
I did not have mild but I think some do. I was told it depended on the severity of damage to the liver however not sure I believe that.
To me it is similar to a surgeon who tells you you will recover from back surgery in two weeks.
Do you need help or advice for your sx?
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