I am type 1 which I believe is the most difficult to cure. I just wonder if this trial does not get rid of the hep c, will they try a different combination/ time duration and have another go or because its a trial will they say that's your lot and back to the older type meds?
Its strange my mother and sister don't mention the hep c at all. Maybe because if they ignore the fact they don't have to deal with it. I wonder if they realise just how nasty and dangerous it is. I haven't told them I'm starting the trial as they clearly don't want to talk about it.
Continued tx, if initial tx fails, is common for HCV clinical trials but make sure this point is covered in your tx contract and ask questions if/when you have them.
U.S. patients will not be going back to "the old meds." The all oral DAAs are here to stay, IMO. The only question is when patients will receive treatment and with which combo.
People deal with the illness of a family member, and with news of another's HCV status particularly, in different ways. Not talking about it is a form of denial and it is caused by fear. The support from your wife will be invaluable and between the two of you getting through this will be manageable. It doesn't take a village although an entire village dedicated to helping its most vulnerable members would sure be nice. :)
Good luck with your trial.
Ray said
Oct 12, 2014
My friend, you will be healed. You should not notice any side effects. People don't like to talk about HCV that is why it's called the silent killer. 3.2 million people are believed to be infected and yet 75% of them are not diagnosed and don't know they have it. The only way your wife can get the virus is by blood contamination. I was infected in 1969 and married in 1976. My wife never contracted the virus. Don't let her share razors and other personal items and make sure you're the only one who handles your blood.
You're going to be healed. All is well.
LC said
Oct 12, 2014
Hi Uncle Barney,
The thought I might not be able to handle treatment and working at the same time is another reason I didn't try treatment a couple of years ago in interferon triple therapy. I started a Abbvie trial Friday and I am hoping the side effects stay minor. Don't be scared, this is a great time to get treatment. Drug companies are very concerned about the almighty dollar, but they have to get all these combo's tested and that translates into free meds for those of us who are lucky enough to get into a trial.
I don't know how many have already been tested with the pills you will be using, but googling that, seeing the cure rates, side effects, etc...was reassuring for me. Of course we don't know the long term effects yet, but I feel like it is worth taking a shot on to get a cure. I don't have a lot of family support either but that might be my own fault because, aside from my kids, no one else I know even knows I have it. So I come here to learn, talk, and ask questions.
Uncle Barney said
Oct 12, 2014
Hello
I'd just like to thank everyone who replied to me. I find your words of support very helpful and its good to know that people have gone through the same thing or similar without too harsh side effects. Also encouraged to hear I should be able to work OK.
I am type 1 which I believe is the most difficult to cure. I just wonder if this trial does not get rid of the hep c, will they try a different combination/ time duration and have another go or because its a trial will they say that's your lot and back to the older type meds?
Its strange my mother and sister don't mention the hep c at all. Maybe because if they ignore the fact they don't have to deal with it. I wonder if they realise just how nasty and dangerous it is. I haven't told them I'm starting the trial as they clearly don't want to talk about it.
My wife on the other hand is very supportive, thank god. But I really worry that I have infected her. I have mentioned on several occasions that she ought to get tested, but she does not seem to want to face up to it. I understand why, but I feel she needs to do it sooner than later. I can't force her.
Tomorrow is 'over the edge day', apprehensive but ready to get started
Regards to all, Barney
Ray said
Oct 11, 2014
Greetings,
I've been on C-Edge for 8 Weeks. I've some irritability and headaches but nothing to complain about. I've been able to maintain my exercise program and I stay pretty active. I am overwhelmed sometimes with fatigue but at 61 that happens.
My guess is they know you are on the other drug and if it were a concern, they would let you know.
I wish you well.
wmlj1960 said
Oct 11, 2014
Welcome Uncle Barney,
I'm not on that Merck C-Edge trial but before starting treatment I did have an issue with an interaction between my treatment meds (Sovaldi / Ribavirin) and one of the meds I was already taking. A suitable medication was substituted and after 12 weeks into Tx, I've had no negative issues.
Yes this forum is an excellent source of information, support and understanding and you'll find yourself feeling like your among friends real quick. As Tig mentioned, the 'search' function is useful and you'll also see some abbreviations used, especially in the member signatures, some of which are unique to this forum: For a list of those abbreviations click HERE.
Tig said
Oct 11, 2014
Hey Barney,
Welcome to the forum! I'm glad you're here. Try and not let the worry get to you, treatment is mentally and physically consuming, all by itself. While I'm not on the C Edge trial and haven't used those specific medications, I do have experience with treatment and the use of Methadone while going through the process. Once they are notified of your current medications, the pharmacists that handle the program will review any and all possible interactions with your meds. They required me to take an EKG pre treatment, mid way and then at the end. They will let you know if that's a requirement of your trial. There was no noticeable change or side effects from the use of it during treatment. They wouldn't offer you this opportunity if there was any risk involved by using it during Tx. These people are very concerned and most are very proactive when your health and well being are involved. They will provide you with some contact info and if you need any questions answered, they are usually very helpful. You are always welcome to ask any questions here. We've got some very knowledgeable people here that will always try to offer some help and educated opinions.
If you need any help navigating the forum, just ask. We've got a very good search function at the top and the Home page will direct you to some excellent established threads. If you don't see what you're looking for, feel free to start your own thread in an appropriate section. Good luck, I'm glad you're here!
Tig
suziq said
Oct 11, 2014
Don't worry about side effects. I did a Merck trial at the age of 79 and there were no side effects except stomach ache and some irritability BUT I did 18 weeks and had ribavirin. You will probably not even notice any difference in how you feel. I am so glad that Merck is reaching out to everyone who might be affected by Hep C. My trial included those with HIV. The people at my trial center took EXCELLENT care of me.
Congratulations on getting your life back together!!!
SuziQ
-- Edited by suziq on Saturday 11th of October 2014 10:13:50 PM
lilbit said
Oct 11, 2014
Welcome Uncle Barney. You most undoubtedly have found the right spot to be. So much information on how to handle everything. Glad you are on board.
Milliganus said
Oct 11, 2014
Welcome Uncle Barney,
I just finished that trial and for me it was a piece of cake. Virtually no side effects. The first week I had a very mild headache but it wasn't bad enough to even take an aspirin. My c-edge trial was a blinded placebo trial, so I didn't know if I was on the real med or not; however they run labs every 2 weeks (without the viral load) and my liver enzymes went down immediately by 50%.
I think you should do great and work will be no problem. If you are on the real med then do not be surprised if your energy goes up. It did with me and has remained.
I wish you the best in your journey to remain clean. It is a much better life being free of that particular demon.
Good luck and keep us posted.
Uncle Barney said
Oct 11, 2014
Hello
I'm new to this site, hope I've posted in the right place.. I'm starting the Merck C-Edge trial on Monday. I'm also on a methadone program. I know I'm lucky to have a chance on the trial, but I haven't been on any other medication for the hep c. So I'm worried about the unknown of being on a trial and the unknown of mixing it up with methadone. I suppose I'm going to find out quite soon. I imagine there's alot of people on here and in general that became infected by using drugs, so the drug companies need to know if its safe to use their medication with people who are taking methadone etc.
I've known I'm infected for about 3 years and my doctors put me off starting the more available meds because I have depression and they thought/knew there might be a trial that I could be eligible for in the future. I work full time and have a mortgage to pay so my main worry with the trial is whether I'm going to be able to carry on working ok. My boss is not really the understanding type, he has the victorian values that you should 'pull your socks up' and get on with it.
I can't help thinking that obviously the drug companies are ultimately in this for the money and to that end might withhold information regarding their new meds. I hope I've been watching too many films..What makes me want to do the trial is the thought that I might be able to get rid of this horrible infection without too much pain of body and mind and that makes the risk of the trial worth taking to me.
For anyone who is interested I will post some info on how the trial is going and I would love to hear from anyone who has already done it/doing it. I'm glad I stumbled across this site so hopefully I won't feel like I'm going through this on my own as I would have done otherwise. Thanks
My friend, you will be healed. You should not notice any side effects. People don't like to talk about HCV that is why it's called the silent killer. 3.2 million people are believed to be infected and yet 75% of them are not diagnosed and don't know they have it. The only way your wife can get the virus is by blood contamination. I was infected in 1969 and married in 1976. My wife never contracted the virus. Don't let her share razors and other personal items and make sure you're the only one who handles your blood.
You're going to be healed. All is well.
The thought I might not be able to handle treatment and working at the same time is another reason I didn't try treatment a couple of years ago in interferon triple therapy. I started a Abbvie trial Friday and I am hoping the side effects stay minor. Don't be scared, this is a great time to get treatment. Drug companies are very concerned about the almighty dollar, but they have to get all these combo's tested and that translates into free meds for those of us who are lucky enough to get into a trial.
I don't know how many have already been tested with the pills you will be using, but googling that, seeing the cure rates, side effects, etc...was reassuring for me. Of course we don't know the long term effects yet, but I feel like it is worth taking a shot on to get a cure. I don't have a lot of family support either but that might be my own fault because, aside from my kids, no one else I know even knows I have it. So I come here to learn, talk, and ask questions.
Hello
I'd just like to thank everyone who replied to me. I find your words of support very helpful and its good to know that people have gone through the same thing or similar without too harsh side effects. Also encouraged to hear I should be able to work OK.
I am type 1 which I believe is the most difficult to cure. I just wonder if this trial does not get rid of the hep c, will they try a different combination/ time duration and have another go or because its a trial will they say that's your lot and back to the older type meds?
Its strange my mother and sister don't mention the hep c at all. Maybe because if they ignore the fact they don't have to deal with it. I wonder if they realise just how nasty and dangerous it is. I haven't told them I'm starting the trial as they clearly don't want to talk about it.
My wife on the other hand is very supportive, thank god. But I really worry that I have infected her. I have mentioned on several occasions that she ought to get tested, but she does not seem to want to face up to it. I understand why, but I feel she needs to do it sooner than later. I can't force her.
Tomorrow is 'over the edge day', apprehensive but ready to get started
Regards to all, Barney
Greetings,
I've been on C-Edge for 8 Weeks. I've some irritability and headaches but nothing to complain about. I've been able to maintain my exercise program and I stay pretty active. I am overwhelmed sometimes with fatigue but at 61 that happens.
My guess is they know you are on the other drug and if it were a concern, they would let you know.
I wish you well.
Welcome Uncle Barney,
I'm not on that Merck C-Edge trial but before starting treatment I did have an issue with an interaction between my treatment meds (Sovaldi / Ribavirin) and one of the meds I was already taking. A suitable medication was substituted and after 12 weeks into Tx, I've had no negative issues.
Yes this forum is an excellent source of information, support and understanding and you'll find yourself feeling like your among friends real quick. As Tig mentioned, the 'search' function is useful and you'll also see some abbreviations used, especially in the member signatures, some of which are unique to this forum: For a list of those abbreviations click HERE.
Hey Barney,
Welcome to the forum! I'm glad you're here. Try and not let the worry get to you, treatment is mentally and physically consuming, all by itself. While I'm not on the C Edge trial and haven't used those specific medications, I do have experience with treatment and the use of Methadone while going through the process. Once they are notified of your current medications, the pharmacists that handle the program will review any and all possible interactions with your meds. They required me to take an EKG pre treatment, mid way and then at the end. They will let you know if that's a requirement of your trial. There was no noticeable change or side effects from the use of it during treatment. They wouldn't offer you this opportunity if there was any risk involved by using it during Tx. These people are very concerned and most are very proactive when your health and well being are involved. They will provide you with some contact info and if you need any questions answered, they are usually very helpful. You are always welcome to ask any questions here. We've got some very knowledgeable people here that will always try to offer some help and educated opinions.
If you need any help navigating the forum, just ask. We've got a very good search function at the top and the Home page will direct you to some excellent established threads. If you don't see what you're looking for, feel free to start your own thread in an appropriate section. Good luck, I'm glad you're here!
Tig
Don't worry about side effects. I did a Merck trial at the age of 79 and there were no side effects except stomach ache and some irritability BUT I did 18 weeks and had ribavirin. You will probably not even notice any difference in how you feel. I am so glad that Merck is reaching out to everyone who might be affected by Hep C. My trial included those with HIV. The people at my trial center took EXCELLENT care of me.
Congratulations on getting your life back together!!!
SuziQ
-- Edited by suziq on Saturday 11th of October 2014 10:13:50 PM
I just finished that trial and for me it was a piece of cake. Virtually no side effects. The first week I had a very mild headache but it wasn't bad enough to even take an aspirin. My c-edge trial was a blinded placebo trial, so I didn't know if I was on the real med or not; however they run labs every 2 weeks (without the viral load) and my liver enzymes went down immediately by 50%.
I think you should do great and work will be no problem. If you are on the real med then do not be surprised if your energy goes up. It did with me and has remained.
I wish you the best in your journey to remain clean. It is a much better life being free of that particular demon.
Good luck and keep us posted.
Hello
I'm new to this site, hope I've posted in the right place.. I'm starting the Merck C-Edge trial on Monday. I'm also on a methadone program. I know I'm lucky to have a chance on the trial, but I haven't been on any other medication for the hep c. So I'm worried about the unknown of being on a trial and the unknown of mixing it up with methadone. I suppose I'm going to find out quite soon. I imagine there's alot of people on here and in general that became infected by using drugs, so the drug companies need to know if its safe to use their medication with people who are taking methadone etc.
I've known I'm infected for about 3 years and my doctors put me off starting the more available meds because I have depression and they thought/knew there might be a trial that I could be eligible for in the future. I work full time and have a mortgage to pay so my main worry with the trial is whether I'm going to be able to carry on working ok. My boss is not really the understanding type, he has the victorian values that you should 'pull your socks up' and get on with it.
I can't help thinking that obviously the drug companies are ultimately in this for the money and to that end might withhold information regarding their new meds. I hope I've been watching too many films..What makes me want to do the trial is the thought that I might be able to get rid of this horrible infection without too much pain of body and mind and that makes the risk of the trial worth taking to me.
For anyone who is interested I will post some info on how the trial is going and I would love to hear from anyone who has already done it/doing it. I'm glad I stumbled across this site so hopefully I won't feel like I'm going through this on my own as I would have done otherwise. Thanks