Hep C Discussion Forum

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.