Hep C Discussion Forum

Hi Donald,

I'm not aware of anyone having any long term problems post Harvoni or the other new DAA's. There have been complaints of joint pain that persists post treatment, but the duration varies in those that do. The longest has been several months, but let up eventually. I certainly wouldn't let that stop me from one of these effective treatments.

Since you are a past recipient of that wonderful drug, Ribavrin, you know what long term post treatment side effects are. It took me a year to get over that stuff, but it worked, so I'm not complaining.

I do feel better post SVR. Just knowing you're not walking around with a time bomb in your belly is enough to cause celebration. The damage caused by the virus takes time to repair. Depending on the amount of damage present, a person may not see complete recovery, but it can help prevent further damage. The brain fog is common and does improve post tx.

All of the good care you're giving yourself is commendable, but it doesn't stop the virus from destroying your liver, among other things. If you can get approved, do it. The longer you have it, the higher your risk for cirrhosis and severe health problems. 

Thanks Tig56. 

i hear many good things about the new treatment. I am concerned about ribavirin. Its pretty nasty. 

I am also hearing that the side effects linger during the post treatment phase. I have been searching for user experiences online. I have read the marketing brochures. They usually dont give you the bad news. 

This is my primary concern with big pharma. They are great and supportive and encourage you to keep going through hell. When its all over, some people dont get better. At this point the wheels fall off and you are left worse off than when you started, and the "treatment" team was gone and the hepatologist was too busy to hear my post-treatment complaints. So I fired him and got a new hepatologist. The second guy wasn't much better. Now I see my MD and I have a naturopathic doctor as well. As I take the non drug approach, I learn about my body and medical things and you go with the flow. I have to eat right and excercise and generally be chronically mindful of self care. 

I do lots of juicing. To assist with my detoxing I do coffee enemas. I believe these have really help to prevent a lot of illness in me. 

I suffer from chronic gas, bloating, constipation, rage, brain fog. This is all new and began during treatment. I have been diagnosed with lyme disease, and gluten intolerance. 

So I would like to hear if anyone has finished treatment and they have cleared and THEY FEEL better.

I would also like to hear from people who have a negative response to the new treatment. Has anyone been 2 years SVR but still feel lousy?

Hi Hepcelt,

Welcome here. I am glad you are asking questions.

Did you say you were a GT1a or a GT1b??

I "was" a GT3a. Like you I had HCV for a long time, I had not felt right or well for a long time, but did not know why, until i was finally diagnosed mid-2015. I think my eventual diagnosis explained many health issues that had been increasing for me for many years. In 2016 I was very easily cured in a trial that I was lucky enough to get into - 8 weeks of sof/vel/vox. Those links Tig sent you - please investigate the extremely high cure rates they are acheiving with the newest daa's. It is a new age! Few sides, short treatment times. I am very glad Epclusa (pan enough for 1's and all GT's) has come to the fore.

Have you been followed by the same hepatologist all this time?? I am suprized they have not encouraged and helped you to explore finally getting your HCV taken care of with the new daa's. Who is suggesting that your fibroscan results equate to not really needing your HCV treated?? Having HCV since the 1970's simply is unacceptable. You need to be rid of it, and you need a progressive doc who will give you the best access to the best drugs for you.

I am very sorry for your prior early failures. Gruelling. And I am sorry for how you have been feeling, and are feeling. You have many health issues on your plate that alone would account for many of the bad things you have been feeling. Today, the HCV, no matter how much (or how little) it may be interconnected to all the things you have been experiencing, IS the one item that CAN be successfully stuck off your list with these modern daa treatments.

By process of elimination, (by taking HCV out of the equation) you would soon see what else may improve. To me it is a no brainer, no one should be packing HCV for decades on top of/with other things. Eliminate the HCV, get rid of it, once and for all. You have had it too long. I don't care if your bloods "might" be indicating you have "near" normal liver function, and (to your credit) that all your good work in trying to cope with your health issues with diet and treating yourself so very well within your abilities possibly minimized damage. But there is no getting around that you have been packing HCV too long, and it needs to exit. All you need is the right doc and the very best drug choice for you, and I believe in quite short order you will be rid of the HCV and then can wait to see what improves.

I am convinced i halted my rapid downhill progression of symptoms that were increasingly plaguing me over the last decades/years and especially escalating so the last couple years before treatment, but I am only about SVR36+weeks now, so, I will gladly wait with patience and a lot of excitement to see what else improves over time. I am thrilled I have ridded myself of the HCV. I now have an astoundingly better chance of regaining much more of my health without dragging that hep hitchhiker around.

My malaise/fatigue HAS improved quite a bit, so have many things, some little, but all and any are really BIG to me! I have NO regrets whatsoever in gambling whether I may or may not feel any better (than I already do today) - I am just so glad to be rid of that risky, dangerous, damaging virus. I do think I am slowly improving in many ways.

Curious, what all your "near" normal bloods are, and what F score they "estimate" you are at now,  and if your levels of fibrosis and liver condition is based only on some (recent?) fibroscans, or if you get U/S's and Cat scans as well? I hope you have been well followed by your hep doc. Also curious about what a "daily" detox entails?? If your liver function (as per some blood tests)  is as "adequate" as you and your doc are assessing, then this is an even more ideal time to be rid of the HCV, before you have sustained more damage/complications.

I give you a lot of credit for all you have been thru and are going through. A rough road. Despite all, you are trying your best to help yourself. Keep exploring the new daa options with your doc and find out how long you might have to wait (to get the best drug treatment regime for you) to rid yourself of the burden of this virus. 

I.m glad to see you here and to meet you.  C.

Here are the newest guidelines. You're going to want RAV testing, my opinion anyway. Since you have had some time between your last treatment, any potential resistance may be reduced, but it's good to know what protocol will be the best suited. They can determine how well you may respond to different regimens. It's a more exacting science now, as long as they do the pre treatment workups and the patient is better advised of their requirements during treatment. They are effective and much shorter in many cases. Certainly shorter than most in your past!

HCV 2017 GT1

Hi Donald,

Welcome to the forum, glad to meet you. You went through hell, no other way to describe 100 weeks of Interferon and Ribavirin, not to mention the rest. Sorry you had to suffer through that and continue to feel so poorly. It sounds like you've got a lot of the same lingering side effects from the Interferon and Riba protocols. You can also suffer from many extra hepatic manifestations to the disease. While you may feel fine and your labs continue to look good, the virus is percolating and damaging not just your liver, but so many other issues can and do present themselves secondary to chronic, long term HCV infection. The fatigue, malaise, depression, etc., have all been associated with it. Many people develop immune system problems after dealing with this long term.

Harvoni or Epclusa (Gilead) are the current blockbuster treatments. There are others available from a few different companies. Gilead has market share right now. They will likely be given for 24 weeks and quite possibly with Ribavirin again, because of your many previous treatments. But they are very, very effective. Mid to high 90 percentiles, with minimal side effects. The Ribavirin will cause it's own set of problems, but they may not be near as difficult when not mixed with Interferon. Just an opinion, but I went through some of what you experienced and while the various Interferon's were effective, they caused their own little war inside our bodies. The rates of success were low, increased when they introduced the NS3/4a PI's, Incivek and Victrelis, but still was low compared to the current oral DAA's. If I were you and can get this started now, you should really consider it. Your liver is seems to be holding up well, do what you can now to stop the virus and then see the improvements begin. Seriously, think hard, you need to do this.

Your diet and health routines sound excellent, even though you clearly are uncomfortable. It's vital to keep moving, treating yourself right and giving treatment another try. There are so many people here that will tell you the same thing. If you can get this approved and paid for, do it. I've got my pom pom waving, can you tell? I hope you consider this a chance to regain some of that lost health, that is surely, at least in part, because of chronic Hep C. It affects far more than just your liver...

If you would like to add a brief description in your signature, it will follow you with each post. That way people will have a quick reference to some of what you've gone through. There is a link in mine to instructions if you're interested. Please use our search function at the top center, enter a keyword or two and you'll see our discussions on the subject. Of course if you need help with anything, don't hesitate to ask.

Keep us informed of your decisions. I'm glad you're here!