Sorry you are having these symptoms, but you are doing the right things by consulting with your cardio and gastro guys. Like Tig said, the bumping heads with your docs and consideration of your water intake are very important things.
Did they run an ECG on you? Did they rule out for you any obvious cardiac issue?
Tig was asking about your hx ... did you in the past/and do you now, have any "other"(than HCV) issues going on? - any other ongoing disease process you were already being followed for or treated for? It is hard for us to even guess things, or perhaps even possibly consider as contributing factors about how you are feeling without the help of more info. But I am glad you and your docs are "on it" and will rule in or out any obvious reasons, or deduce the most likely reasons for how you are feeling.
Even just some basic info on your HCV status would be helpful - your Fscore (level of fibrosis/cirrhosis), labs, what ultrasounds/fibroscans/or biopsies you may have had and what they showed, your symptoms before treatment. It IS good to know you have had HCV since 1992, in an aprox 25 year period we can guess you might have some kind of degree of fibrosis, that you might have been experiencing some symptoms, perhaps such as fatigue, prior to treatment.
You seem already convinced or highly suspicious that epclusa alone is causing you all this grief, that these are "sides" of epclusa. While being on a powerful drug treatment to cure your longstanding HCV, you indeed may not feel well, but some of your symptoms do not fit the "common" sides that some people experience. You may well have other contributing factors that are helping to make you feel this way, and give you these symptoms that may be really unpleasant but may not be entirely dire or mysterious. Unexplained symptoms such as chest pains and wierd tingling sensations are disturbing yes, but may well not have much at all to do with HCV drugs. I have read many of the studies about the development of sof/vel and the rigorous testings they did to identify the possible sides, and like many of the other new, good effective anti-viral drugs available today, they all have some possiblity of "sides", such a headaches, sometimes nausea and the like.
First things first, the biggest elephant in the room is that you have only been on the epclusa for 4 weeks? Many people do feel something especially their first while on epclusa, "sides" such as headaches, feeling bagged, and those can dissipate as you get further along through your course of tretament. Unfortunately, we take powerful medications, right at a time fraught with fear and unknowns, and perhaps at a time we are already not feeling well anyway, which only contributes even more anxiety to the mix, that helps nothing! But, know you ARE doing the right thing, you are lucky enough to be getting one of the best tretaments there is, to wipe out this dreadful virus which has and is harming you.
I did not feel well at all on epclusa, BUT, mind you ... I felt not at all well before epclusa too!, I lost a bit of weight on epclusa as well, it only served to make me feel worse, weaker, more unwell, it added hardship, being skinny I felt shaky at times, my aorta would just be a-pounding on exertion, I had gone through a lot of bodily stress just prior to treatment, was already "ill", and exhausted by the time I got to treatment and was still stressed through treatment, additional stessors help nothing! I brought all my previous feelings of unwellness right along with me to be included up with the mix of a powerful drug treatment, to which my body had to additionally deal with and do clean up, in the aftermath of milions of viruses being killed off within me.
6lbs. you lost you say, so, how underweight are you, what should you be weighing normally?
Terrible when you have a multiude of things that can all contribute to making you feel unwell (or making you feel even worse). Insomnia, lack of appetite and weight loss, some people think these things are not severe, but when your body is already being pushed and under great pressures, they can be very bad. Try your very best to combat these things with ANYTHING you can think to do to coddle yourself into being able to be well nourished and getting enough re-coup/repair sleep. Fuel and rest are really important, and so is combatting stress too. All these thing are interconnected, and cyclical, just one of them, out of sorts, helps to cause a cascading negative effect. Work however best you possibly can on your rest and diet.
Please, please tell us you HAVE been drinking a MINIMUM of a gal of water per day - THIS is SO important! I think many people do not realize this big mistake (underwatering) especially the first few weeks of being on anti-viral drugs, and suffer through being under-watered, until they finally discover it is true, that dilution IS important and helps in many ways.
Hang in there bro, I am betting things will start letting up for you as you go along - hit that water. C.
Tig said
Apr 1, 2017
I hope you get back on your feet soon. It's unusual to have such profound side effects from Epclusa, but there will always be a percentage of people that experience them. I'm including a link that is more in depth than most consumer sites. I'm sorry that you have had to deal with any of this, but I want you to find strength knowing it won't last much longer. Once you finish treatment, the drugs clear your system fairly fast. Without the virus and the treatment holding you down, you'll begin to notice the improvements you're hoping for.
You didn't mention how much water you're drinking per day. Be certain you are drinking at least a gallon of water daily!
Thank you for response Tig56, I have been to see my cardiologist , my Dr and my gatro just in the past few weeks. will see my gastro next week.. they seem to feel that since these symtoms started around the time i started Elpclusa it could be some of the side effects ... since the drug has not been tested very long. As for the info you asked about i do not have in my possision at this time did not get copies . will share it latter. Feel very fatiuged ,weak and trembling in hands worse in the mornings , insomnia. will be following up with my Dr's very soon.
Tig said
Mar 31, 2017
Hi Timothy,
First of all, welcome to the forum! I'm glad you said hello. Epclusa isn't known for much in the way of side effects. Have you discussed this with your doctor? Without more knowledge of your health background, limits opinion. Can you provide us with any other health information? Other medication you may be on can affect the way you feel. The fact you're having chest pain at all is concerning if you don't have a reason for it. Of course the first concern is cardiac problems, don't let this go unanswered. We can offer opinions only, medical advice, especially when it may be urgent, should come from your doctor.
Many of us over the course of treatment have lost weight. Back a few years when I was on Interferon, I lost 55 pounds over 7 months time. Your diet, metabolism and level of activity, in addition to the introduction of Epclusa, can really change the way your body reacts to everything. Don't be surprised when things fluctuate, from weight, moods and blood tests. Keeping a journal and asking questions related to those entries helps to keep you and your doctor/nurse informed. If I had failed to keep notes, I would've forgotten half of what I don't know anyway!
When you can, add some information to your signature line. You can see what I added to mine and you'll see that it helps understand what each of us has gone through. The addition of genotype, viral load, fibrosis stage, ALT and AST are but a few things that help. There is a red link in mine with instructions if needed. Don't hesitate to ask questions if you have them.
One more bit of advice is to be absolutely certain you are drinking at least a full gallon of water everyday. Do that without fail! To do otherwise invites side effects from these new oral drugs. That is something I'm certain of. If you haven't followed that rule, it may be part of the reason you're feeling poorly.
Timothyk said
Mar 31, 2017
Hello, First time doing this ... not sure what i am doing. I am 60 yrs old have hep-c gyno-type 2 . since 92 Almost finished with first bottle of Epclusa i have been having some side effects loss of appitite , lost six pounds, also chest pains in front and in back kind of warm tingling sesations.. would like to hear if anyone else the same.
Hi Timothy,
Welcome here from me too.
Sorry you are having these symptoms, but you are doing the right things by consulting with your cardio and gastro guys. Like Tig said, the bumping heads with your docs and consideration of your water intake are very important things.
Did they run an ECG on you? Did they rule out for you any obvious cardiac issue?
Tig was asking about your hx ... did you in the past/and do you now, have any "other"(than HCV) issues going on? - any other ongoing disease process you were already being followed for or treated for? It is hard for us to even guess things, or perhaps even possibly consider as contributing factors about how you are feeling without the help of more info. But I am glad you and your docs are "on it" and will rule in or out any obvious reasons, or deduce the most likely reasons for how you are feeling.
Even just some basic info on your HCV status would be helpful - your Fscore (level of fibrosis/cirrhosis), labs, what ultrasounds/fibroscans/or biopsies you may have had and what they showed, your symptoms before treatment. It IS good to know you have had HCV since 1992, in an aprox 25 year period we can guess you might have some kind of degree of fibrosis, that you might have been experiencing some symptoms, perhaps such as fatigue, prior to treatment.
You seem already convinced or highly suspicious that epclusa alone is causing you all this grief, that these are "sides" of epclusa. While being on a powerful drug treatment to cure your longstanding HCV, you indeed may not feel well, but some of your symptoms do not fit the "common" sides that some people experience. You may well have other contributing factors that are helping to make you feel this way, and give you these symptoms that may be really unpleasant but may not be entirely dire or mysterious. Unexplained symptoms such as chest pains and wierd tingling sensations are disturbing yes, but may well not have much at all to do with HCV drugs. I have read many of the studies about the development of sof/vel and the rigorous testings they did to identify the possible sides, and like many of the other new, good effective anti-viral drugs available today, they all have some possiblity of "sides", such a headaches, sometimes nausea and the like.
First things first, the biggest elephant in the room is that you have only been on the epclusa for 4 weeks? Many people do feel something especially their first while on epclusa, "sides" such as headaches, feeling bagged, and those can dissipate as you get further along through your course of tretament. Unfortunately, we take powerful medications, right at a time fraught with fear and unknowns, and perhaps at a time we are already not feeling well anyway, which only contributes even more anxiety to the mix, that helps nothing! But, know you ARE doing the right thing, you are lucky enough to be getting one of the best tretaments there is, to wipe out this dreadful virus which has and is harming you.
I did not feel well at all on epclusa, BUT, mind you ... I felt not at all well before epclusa too!, I lost a bit of weight on epclusa as well, it only served to make me feel worse, weaker, more unwell, it added hardship, being skinny I felt shaky at times, my aorta would just be a-pounding on exertion, I had gone through a lot of bodily stress just prior to treatment, was already "ill", and exhausted by the time I got to treatment and was still stressed through treatment, additional stessors help nothing! I brought all my previous feelings of unwellness right along with me to be included up with the mix of a powerful drug treatment, to which my body had to additionally deal with and do clean up, in the aftermath of milions of viruses being killed off within me.
6lbs. you lost you say, so, how underweight are you, what should you be weighing normally?
Terrible when you have a multiude of things that can all contribute to making you feel unwell (or making you feel even worse). Insomnia, lack of appetite and weight loss, some people think these things are not severe, but when your body is already being pushed and under great pressures, they can be very bad. Try your very best to combat these things with ANYTHING you can think to do to coddle yourself into being able to be well nourished and getting enough re-coup/repair sleep. Fuel and rest are really important, and so is combatting stress too. All these thing are interconnected, and cyclical, just one of them, out of sorts, helps to cause a cascading negative effect. Work however best you possibly can on your rest and diet.
Please, please tell us you HAVE been drinking a MINIMUM of a gal of water per day - THIS is SO important! I think many people do not realize this big mistake (underwatering) especially the first few weeks of being on anti-viral drugs, and suffer through being under-watered, until they finally discover it is true, that dilution IS important and helps in many ways.
Hang in there bro, I am betting things will start letting up for you as you go along - hit that water. C.
I hope you get back on your feet soon. It's unusual to have such profound side effects from Epclusa, but there will always be a percentage of people that experience them. I'm including a link that is more in depth than most consumer sites. I'm sorry that you have had to deal with any of this, but I want you to find strength knowing it won't last much longer. Once you finish treatment, the drugs clear your system fairly fast. Without the virus and the treatment holding you down, you'll begin to notice the improvements you're hoping for.
You didn't mention how much water you're drinking per day. Be certain you are drinking at least a gallon of water daily!
Epclusa MD
Thank you for response Tig56, I have been to see my cardiologist , my Dr and my gatro just in the past few weeks. will see my gastro next week.. they seem to feel that since these symtoms started around the time i started Elpclusa it could be some of the side effects ... since the drug has not been tested very long. As for the info you asked about i do not have in my possision at this time did not get copies . will share it latter. Feel very fatiuged ,weak and trembling in hands worse in the mornings , insomnia. will be following up with my Dr's very soon.
Hi Timothy,
First of all, welcome to the forum! I'm glad you said hello. Epclusa isn't known for much in the way of side effects. Have you discussed this with your doctor? Without more knowledge of your health background, limits opinion. Can you provide us with any other health information? Other medication you may be on can affect the way you feel. The fact you're having chest pain at all is concerning if you don't have a reason for it. Of course the first concern is cardiac problems, don't let this go unanswered. We can offer opinions only, medical advice, especially when it may be urgent, should come from your doctor.
Many of us over the course of treatment have lost weight. Back a few years when I was on Interferon, I lost 55 pounds over 7 months time. Your diet, metabolism and level of activity, in addition to the introduction of Epclusa, can really change the way your body reacts to everything. Don't be surprised when things fluctuate, from weight, moods and blood tests. Keeping a journal and asking questions related to those entries helps to keep you and your doctor/nurse informed. If I had failed to keep notes, I would've forgotten half of what I don't know anyway!
When you can, add some information to your signature line. You can see what I added to mine and you'll see that it helps understand what each of us has gone through. The addition of genotype, viral load, fibrosis stage, ALT and AST are but a few things that help. There is a red link in mine with instructions if needed. Don't hesitate to ask questions if you have them.
One more bit of advice is to be absolutely certain you are drinking at least a full gallon of water everyday. Do that without fail! To do otherwise invites side effects from these new oral drugs. That is something I'm certain of. If you haven't followed that rule, it may be part of the reason you're feeling poorly.
Hello, First time doing this ... not sure what i am doing. I am 60 yrs old have hep-c gyno-type 2 . since 92 Almost finished with first bottle of Epclusa i have been having some side effects loss of appitite , lost six pounds, also chest pains in front and in back kind of warm tingling sesations.. would like to hear if anyone else the same.