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Post Treatment Health Issues

It is with caution that I am writing this, and it is because I never want to alarm people who are considering treatment, in treatment, or those who have recently completed treatment.

As many of you will be aware, the older treatment was grueling in it’s side effects and for many it included long-term health issues after treatment.

As I have shared before, I treated for 48 weeks with interferon and ribavirin. I developed something called neuropathy during treatment and I still have it years later. I am cured of hepatitis c and I am able to manage the neuropathy with drug therapy, but I am not alone in having issues related to treatment. I also had high A1C levels for two years after completing therapy, which indicated I was pre-diabetic. The A1C tests since have returned to normal range after I made changes in my diet and level of activity.

There are a number of health problems that the old therapy caused. Some people have thyroid issues, mental health, neurological, autoimmune disorders and a number of conditions that are mostly because of their interferon therapy, as research and anecdotal stories have suggested. Interferon is something our body produces on it’s own. The use of interferon in treating hepatitis c, as it is used in other diseases, is meant to boost our immune response.

As I have seen, and heard, a significant number of people do experience long-term health problems they connect with their interferon therapy.

Fortunately it looks like this therapy is a thing of the past, at least that is the hope.

Treating physicians have traditionally been reluctant to deal with these post-treatment health concerns and usually we are left to our primary physician’s care to manage them. They typically know little about the damage interferon can cause. What are we left with? Treating symptoms and management of chronic conditions seems like the only options available. This is the case with my own health post-treatment, years after completing therapy. In my own investigations it appears that ribavirin is looked at in combination with interferon and other HCV therapy only, as far as any research I am aware of. There is a long list of side effects for both of these drugs and ribavirin is still in use today in combination with Direct Acting Antivirals.

New therapy:

With new treatments that do not include interferon, and in many cases don’t include ribavirin, we have new concerns and questions. Are the side effects so easy as to not merit concern? Whenever someone asks me about side effects with new therapies I respond with what I hear from people who are treating or have treated with these drugs. At one extreme people say they have not felt better in a long time-in therapy. At the other end of the spectrum people say they feel awful, but most are in the middle with few side-effects and generally not nearly as severe as we saw with the older therapy.

This would lead some of us to think that any long-term issues may be greatly diminished with new therapies. It is early days, and I do not want to cause alarm or needless worry for anyone.

Anecdotally, I can tell you that we are hearing from some people who have treated with new drugs that are now cured, and some of them have ongoing complaints they did not have prior to their treatment. Their concerns are not always related to their liver health, but in some case are undoubtedly linked. There is no real-world data to support much more than saying that there are going to be some issues for some people that may be related to their treatment with new highly curative treatments for HCV.

I think we need more time and more research, and it is my hope that this will shed light on why, which speaks to how we may be able to test in advance so that personalized treatment can be delivered in the future.

In the meantime I recommend that people report any ongoing concerns both during and after you treat, no matter what therapy you receive.

A cure has always been and remains the prize, and we should not diminish the importance of this as being an important goal, but I always encourage people to inform themselves before embarking on treatment. Ask questions, do research, talk to others within the peer community as well as your healthcare provider. I know some of you will do this, and for others you will not, and this is your decision, but being informed gives you power, and this is after all, all about you.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The HepatitisC.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • dworn
    10 months ago

    I finished a 36 week treatment of interferon, Ribavirin and 12 Boceprivir daily. In addition, I had several blood transfusions and weekly injections of Procrit due to extreme anemia. That was 6 years ago. My doctor told me I had some of the most extreme side effects he had seen. I had hallucinations, was too weak to walk so I used a wheelchair if I had to leave the house, muscle pain, 11 falls and lost my hair. Plus all the expected side effects. This was the 4th time in my life I have been on interferon in an attempt to cure the Hep C. This treatment cured me. However, I am now on Adderall because of my inability to focus and complete tasks, I have lost many memories from before, during and after my treatment and I have countless lumps under the skin on my arms which look as if I have been in a fire. This treatment has affected my emotions. I am, of course, relieved I was cured, but also feel anger at the hell I had to go through. I am fortunate that I accidentally found a therapist to help me with the inability to focus, and she had worked 20 years at 2 teaching universities and directly with my doctor and is very knowledgeable about the drugs I took and the effects people have experienced, some of them long-term. I am struggling.

  • Daryl Luster author
    10 months ago

    dworn, I am sorry to hear of your experience with the old treatment, and same here like many others, share in some of your experiences both during and after Tx.I treated for 48 weeks myself with Peg and Riba, and to be honest it was the hardest year in my life and it took 2 years for me to recover in most ways, but never completely, even now 8 years later. We called it rat poison and it was a name well-earned indeed, and you probably know of others, like I do, who could not use the rat poison for more than a few days or weeks before dreadful reactions and side effects that forced them to stop. Then of course came the next round of triple rat poisons which were even worse. I am glad you have found help and some semblance of normalcy, even though you are struggling. You are not alone in that my friend, I struggle too with neuropathy, brain function issues and other medical problems, and ongoing depression. I am glad as you are to be hep c free, but the cost was great for many of us. I think being rid of hep c years ago is in our favor. I think we bought some extra time, but without any doubts in my mind it was not without a cost. Good luck and we just keep on moving forward as best as we can because we are not quitters are we.

  • Dee
    4 years ago

    Dear Daryl, thank you so much for sharing. I really appreciate so much. I treated with Incivek, Pegintron and Ribavirin. It was so bad I wanted to quit it. During the worst of it I lost my ability to read, write or even watch TV. I had to try to watch very old TV from more innocent times before all the violence, Golden Girls, Happy Days. I tried to watch funny shows, like How I met your Mother. That helped. It took me years to get rid of the brain fog. In the past when trying to tell people they would say I was fear mongering. I am glad we are now allowed to talk about the sx of the old drugs. I am glad there are newer, easier, shorter treatments for people. I always appreciate your writing, thank you, Dee

  • Daryl Luster author
    4 years ago

    Dear Dee, thanks for your kind words, and I know what you mean about the sadness in the old therapy, I felt it as well.I know many who were cured in the triple therapy like you. Congratulations on beating the dragon! Being honest is never fear mongering and I feel like we were self censoring too because we did not want to scare the newbies.Yes, thankfully for those who are new to Tx they will never know the harshness that PR combo could cause. Great progress we have seen in such a short time is so uplifting, if we can only make it more accessible next.

  • 24sy3tt
    4 years ago

    Thanks for your very insightful post Daryl. I’ve been thinking along the same lines as you have. I’m on Harvoni right now and when anyone posts that they are having abnormal SEs one of the moderators (who are from Gilead) say that can’t be, it must be the HCV. Many drugs have sides that don’t show up for months or yrs after the original drug trials. The other thing I’ve been wondering about is that I got several what are referred to as “extra-hepatic manifestations”. I have cryoglobulinemea which has caused things like Raynauds, Sjorgens Syndrome, chronic pain, etc. from the HCV, even though I have very little liver damage. After more than 40 yrs with HCV I’m wondering if any of this will go away after treatment. But, at this point, no one really knows. Actually I’m feeling better than I have for yrs at week 5 of Harvoni. I just hope it continues when I finish this.

  • Dee
    4 years ago

    Hi I had cyroglobulinemea before I was cured of HCV. It went away after treatment. I pray you will have the same result. I am almost positive you will. Not only have the red dots and purple splotches gone away; so have the brown stains from the iron in the blood. I had been told it would be like a tattoo and never go away, it did.
    Good luck to you, Dee

  • Daryl Luster author
    4 years ago

    Thank you for your comments and the truth is that nobody can ever predict with any certainty what side effects will be like, and as to post treatment you are right when you say we just don’t know enough about the new therapies.
    One thing I know is a truth, and that is that life without HCV is a better life, even if we have some issues. I will qualify that statement by saying that it is correct only if the issues are not worse than the illness we seek to eradicate. Most people see these things resolved in time after Tx, and my hope is that you will too! That is great that you are feeling so much better in Tx!! Keep it up!

  • mathy
    4 years ago

    my husband started treatment for hepc with ribavin and solvaldi, within 3 weeks his side effects got so bad that he went to emergency room where he was diagnosed with toxic poisoning. he has been off the meds for 4 weeks but has now lost his hearing completely. he was not having hepc symptoms but agreed with va hosp to do treatment. he is doing so poorly now, he cant get out of bed. any advice would be so appreciated because I am so lost

  • Daryl Luster author
    4 years ago

    Mathy, i am so sorry to read about your husband’s terrible result. It almost sounds like some kind of allergic reaction, and what did they do to assess him in hospital? As I tell people, there is simply no way to predict side effects or our reaction to these drugs in every person. They are tested in clinical trials but not all experiences are the same with any drug therapy. I hope that he is doing better soon, and please don’t give up hope.

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